Dear reader(s):
First, an announcement: the dates have been set! My isolation is to take place between August 12th and 19th. Stupid LID diet starts next Thursday, the 29th, and I am currently in the process of eating every delicious iodine-filled thing I can find in preparation for food hell. I will be blogging extensively during my period of solitary confinement - possibly video blogging as well now that I have an awesome new laptop with a built-in webcam - so tune in in August for my super-thrilling words of boredom and woe.
And now, on to the topic I will be ranting about today: public reactions to my thyroidectomy scar.
Lots of cancer patients have to deal with looking different after treatment - usually the main changes are hair loss from chemo and/or chest alterations from a mastectomy. Luckily for me, my type of cancer (thyroid) involves a treatment that doesn't usually cause hair loss; plus I got to keep my awesome boobs. Unluckily, the thyroid surgery left a pretty visible scar on my neck, and mine hasn't been healing well so it's particularly noticeable. Normally that doesn't bother me - I've had it for a long time and I've accepted the way I look now - but every so often I get asked about it by a total stranger. Usually the stranger is a child, and so usually I don't mind. I know kids don't have much of a verbal filter. But today I was taking the subway (to a job interview) and had a total stranger - an adult stranger - ask me: "What happened to your neck?".
I didn't know this person, and it was none of his business what happened to my neck or any other part of me. Occasionally I will get this question at a party too, after a couple of drinks have been had, or at a bar. What I really don't understand is why I anyone thinks it's acceptable to ask me this question at all. For all they know I could've been attacked by an ex-husband with a knife, or mugged, or had some equally horrible emotional trauma. In fact, having cancer WAS a pretty emotionally traumatizing experience, and the last place I want to rehash it is somewhere crowded or public. Basic common sense would suggest to anyone who meets me that having my neck cut open is likely to have been unpleasant, so why would anyone in their right mind think that I would enjoy discussing it again - especially if I'm just trying to have a drink with my girlfriends at a bar or minding my own business on the stupid train? Would these people ask someone with a scarf around their head how they lost their hair? Or say to a woman whose shirt didn't quite fit right: "Hey, where's your other boob?". Possibly yes - I'm sure that level of social ineptitude exists - but I doubt it.
So what is it, reader(s), about a roughly three-inch long, slightly hypertrophic scar that causes people to, as my roommate would say, "spontaneously combust into douchebaggery"? (That phrase is pending copyright, by the way.) I understand that it is located right between my perfect face and rockin' tits, and given that most of these aforementioned douchebags are male it would follow that its location tends to draw the eye. But if it is really so distracting that one feels the need to completely discard manners (not to mention my feelings) and verbally acknowledge it, then why not simply look either up or down instead? Honestly, I'd rather a creepy jerk stare at my chest than pry into my personal life. Either way you're a creepy jerk and have no chance of any further interaction with me, but at least the first choice means I don't have to talk to you.
Before I met my boyfriend, nearly every boy I met at a party who showed any interest in me eventually worked up a high enough blood alcohol content to ask about my scar. My boyfriend was the only one who didn't. That's probably why he won out, and why he's been the only man who has the gonads to stick it out through all the cancer crap. I think I deserve to be seen as a person, not a disease - or a scar - and it has been shockingly disheartening to discover how many people lack the emotional and/or intellectual capacity to do so.
So in preparation for future encounters with such people, I think I need to come up with a better answer to the "What happened to your neck?" question. Normally I just mumble something about a surgery, but maybe it's best just to fight rudeness with rudeness. Which response, dear reader(s), do you think would be most uncomfortable for the asker:
1) Look them straight in the eye and say, "I have cancer." Maintain eye contact. Look very serious and/or sad. Possibly learn how to fake crying.
2) Make up a long and obviously untrue story, possibly involving ninjas, and then walk away.
3) Same as above, but with a story that seems like it could be true and suggests that I am or was a prostitute or gang member.
4) Ask them what happened to their face/brain/manners.
5) Burst into tears. This would also require learning how to cry at will.
6) Play dead.
7) All of the above. One after the other. Very quickly.
If no one comments on this I'm choosing number 7. You have been warned. Also I'd love to hear stories from people who have had similar problems with scars, post-chemo baldness, or any other physical abnormality. Remember: only YOU can prevent spontaneous douchebaggery (COPYRIGHT PENDING).
Yours,
RG
7/23/2010
5/12/2010
You want some exposition? You got it.
Dear reader(s?):
I'm sure you all want to know what the point of this blog is. Well, there's a short version and a long version.
The Short Version:
Diagnosed with papillary thyroid cancer October 2008, middle of junior year of college. Surgery. Crazy treatment involving radioactive iodine - basically went on a lame diet for a long time AND off hormone meds, then swallowed a radioactive pill and couldn't go near living creatures for 5-7 days. Then, remission for about two seconds. December 09, routine scan went bad. March 2010, cancer again! More surgery in April. Now a summer of crazy radioactive iodine treatment! Again! This time decided to blog about it, mostly because last time I was really really bored. And I like to write. And I also like to talk about myself.
The Long Version:
...really? You want the long version? Okay, here, how about just a list of FAQs about my condition, and if anyone wants to know anything else you can leave it in the comments. K?
What is papillary thyroid cancer?
Well, everyone knows what cancer is. Papillary is the most common type of cancer that occurs in the thyroid. A thyroid is a little butterfly-shaped gland in the front of your neck that controls your hormone production, especially metabolism (a lot of overweight or underweight people have thyroid problems). Papillary thyroid cancer is actually quite treatable in most cases - five year survival rates are generally above 95 percent, especially in young people. So no, I am not going to die. At least not from thyroid cancer. At least not anytime soon.
How did you get it? Did you have any symptoms?
No idea. The surgeon who removed my thyroid said he thought I might've had a condition called Hashimoto's Disease which causes the thyroid gland to overproduce hormones and simply never noticed it. Apparently some doctors think that Hashimoto's can lead to thyroid cancer. Still no official cause, though. And I never had any symptoms beforehand. I was on my way to a class one afternoon when I noticed in the mirror that my neck was shaped wrong - there was a huge lump on the left side that hadn't been there the day before. I went to the school wellness center, and was told things like "it can't possibly have grown that fast, it must have been there for months without you noticing it", "you're the medical mystery of the day!", and "it's probably not cancer". A few weeks later...mystery solved.
Wait - they removed your thyroid gland? All of it? Can you live without one?
Obviously I'm still alive, so I think that answers the last question (and yes, people have asked me that). Thyroid surgeries are actually quite common, as are thyroid problems, especially in women. People with thyroid problems usually take hormone-replacement drugs to correct imbalances, and people like me can live just fine on thyroid-replacement medication. When my dose is right I actually feel better than I did before. But getting the right dose is tricky and usually takes a year or two, plus I have to be on overdose when the docs think I still have cancer because it keeps thyroid cells from reproducing. So most of the time I feel like crap.
WTF is radioactive iodine?
Most cancer patients get chemo and/or radiation - thyca (that's our cute little nickname for thyroid cancer) patients get radioactive iodine treatments. Radioactive iodine, as some of my doctors have put it, is kind of a "silver bullet" for thyroid cancer. Because treating cancer is like killing werewolves, only not as cool. Anyway, the basic point as I understand it is that thyroid cells drink in iodine to function, so to get rid of cancerous thyroid cells they "starve" them of iodine for a long time - which means a low-iodine diet and no hormone meds - and then give them a huge radioactive dose of iodine to "ablate" them (blow them up). If you've ever seen a cartoon where the monster is killed by feeding it so much food that it explodes - it's like that. Only on a microsopic scale. And not as cool.
So it's not chemo?
Technically, as I was told by nuclear medicine doctor, it is a form of specialized, targeted chemo. As far as I understand (let's all keep in mind that I have no medical training whatsoever) chemotherapy basically means a treatment for cancer that involves using chemicals to kill a large number of cells in the area with the cancer, both healthy and unhealthy. Radioiodine falls under that category. Sometimes I refer to it as chemo in conversations because it's easier to say and understand than "radioactive iodine" or "nuclear medicine treatment", etc. But no, it doesn't make your hair fall out, and usually there's no vomiting involved.
But you can live without your medicine for that long?
If you can call it living. For about 4-6 weeks, yes. If I were to not take them at all for...maybe 2-3 months or more, I would eventually die. Again, this is according to one of my doct ors. But being off meds for a long time is pretty miserable. Being low on thyroid hormones causes a person to become what is known as "hypothryoid" - we cancer patients call it "going hypo". Side effects of hypothryoidism include extreme tiredness, extreme depression, extreme coldness, and being an extreme bitch to one's loved ones.
What does a low-iodine diet consist of?
Hardtack and gruel. Nuts and berries. Crap. It's complicated, but the three major categories of foods to avoid are salt, dairy, and seafood. Guess what has salt and dairy in it? Pretty much everything you can find at any grocery store. Mostly I eat fresh fruits and vegetables, whatever meat I can find that hasn't had any preservatives added (this usually involves specialty butchers), kosher foods, and rare salt-free versions of things to which I add kosher salt (the only kind of salt allowed). Oh, and if I can find a breadmaker I can make my own bread. But seriously, it pretty much is nuts and berries, because I can't cook. At all.
Does it usually come back?
Nope. Based on estimates from various doctors, there was a 3-10% chance of my cancer recurring. I'm just lucky.
Who the hell are you, anyway?
Oh, right! Me! This is my favorite topic! Uh, for starters, I'm 22 years old, about to graduate from college with two bachelor's degrees in English and Theatre. I live in the big city. Currently I'm trying to find summer work to pay for grad school in the fall and taking the last class I need to finish up all my core credits for undergrad. I'm enrolled in a masters program in Writing and Publishing, and no I don't know what I want to do with my life. Right now my goals pretty much consist of getting through cancer treatment and paying my rent. Unfortunately those are not mutually exclusive.
Other questions??
Leave a comment. If you want more info about thyroid cancer, thyca.org is a really great resource. Thyroid cancer is rare and doesn't get a lot of press, but it's one of the most common cancers in college students like me and instances of thyroid cancer are growing rapidly, so it's important to check your neck for lumps. And that's all the stereotypical cancer patient stuff I'm going to say for now.
Yours,
Radioactive Girl
I'm sure you all want to know what the point of this blog is. Well, there's a short version and a long version.
The Short Version:
Diagnosed with papillary thyroid cancer October 2008, middle of junior year of college. Surgery. Crazy treatment involving radioactive iodine - basically went on a lame diet for a long time AND off hormone meds, then swallowed a radioactive pill and couldn't go near living creatures for 5-7 days. Then, remission for about two seconds. December 09, routine scan went bad. March 2010, cancer again! More surgery in April. Now a summer of crazy radioactive iodine treatment! Again! This time decided to blog about it, mostly because last time I was really really bored. And I like to write. And I also like to talk about myself.
The Long Version:
...really? You want the long version? Okay, here, how about just a list of FAQs about my condition, and if anyone wants to know anything else you can leave it in the comments. K?
What is papillary thyroid cancer?
Well, everyone knows what cancer is. Papillary is the most common type of cancer that occurs in the thyroid. A thyroid is a little butterfly-shaped gland in the front of your neck that controls your hormone production, especially metabolism (a lot of overweight or underweight people have thyroid problems). Papillary thyroid cancer is actually quite treatable in most cases - five year survival rates are generally above 95 percent, especially in young people. So no, I am not going to die. At least not from thyroid cancer. At least not anytime soon.
How did you get it? Did you have any symptoms?
No idea. The surgeon who removed my thyroid said he thought I might've had a condition called Hashimoto's Disease which causes the thyroid gland to overproduce hormones and simply never noticed it. Apparently some doctors think that Hashimoto's can lead to thyroid cancer. Still no official cause, though. And I never had any symptoms beforehand. I was on my way to a class one afternoon when I noticed in the mirror that my neck was shaped wrong - there was a huge lump on the left side that hadn't been there the day before. I went to the school wellness center, and was told things like "it can't possibly have grown that fast, it must have been there for months without you noticing it", "you're the medical mystery of the day!", and "it's probably not cancer". A few weeks later...mystery solved.
Wait - they removed your thyroid gland? All of it? Can you live without one?
Obviously I'm still alive, so I think that answers the last question (and yes, people have asked me that). Thyroid surgeries are actually quite common, as are thyroid problems, especially in women. People with thyroid problems usually take hormone-replacement drugs to correct imbalances, and people like me can live just fine on thyroid-replacement medication. When my dose is right I actually feel better than I did before. But getting the right dose is tricky and usually takes a year or two, plus I have to be on overdose when the docs think I still have cancer because it keeps thyroid cells from reproducing. So most of the time I feel like crap.
WTF is radioactive iodine?
Most cancer patients get chemo and/or radiation - thyca (that's our cute little nickname for thyroid cancer) patients get radioactive iodine treatments. Radioactive iodine, as some of my doctors have put it, is kind of a "silver bullet" for thyroid cancer. Because treating cancer is like killing werewolves, only not as cool. Anyway, the basic point as I understand it is that thyroid cells drink in iodine to function, so to get rid of cancerous thyroid cells they "starve" them of iodine for a long time - which means a low-iodine diet and no hormone meds - and then give them a huge radioactive dose of iodine to "ablate" them (blow them up). If you've ever seen a cartoon where the monster is killed by feeding it so much food that it explodes - it's like that. Only on a microsopic scale. And not as cool.
So it's not chemo?
Technically, as I was told by nuclear medicine doctor, it is a form of specialized, targeted chemo. As far as I understand (let's all keep in mind that I have no medical training whatsoever) chemotherapy basically means a treatment for cancer that involves using chemicals to kill a large number of cells in the area with the cancer, both healthy and unhealthy. Radioiodine falls under that category. Sometimes I refer to it as chemo in conversations because it's easier to say and understand than "radioactive iodine" or "nuclear medicine treatment", etc. But no, it doesn't make your hair fall out, and usually there's no vomiting involved.
But you can live without your medicine for that long?
What does a low-iodine diet consist of?
Does it usually come back?
Nope. Based on estimates from various doctors, there was a 3-10% chance of my cancer recurring. I'm just lucky.
Who the hell are you, anyway?
Oh, right! Me! This is my favorite topic! Uh, for starters, I'm 22 years old, about to graduate from college with two bachelor's degrees in English and Theatre. I live in the big city. Currently I'm trying to find summer work to pay for grad school in the fall and taking the last class I need to finish up all my core credits for undergrad. I'm enrolled in a masters program in Writing and Publishing, and no I don't know what I want to do with my life. Right now my goals pretty much consist of getting through cancer treatment and paying my rent. Unfortunately those are not mutually exclusive.
Other questions??
Leave a comment. If you want more info about thyroid cancer, thyca.org is a really great resource. Thyroid cancer is rare and doesn't get a lot of press, but it's one of the most common cancers in college students like me and instances of thyroid cancer are growing rapidly, so it's important to check your neck for lumps. And that's all the stereotypical cancer patient stuff I'm going to say for now.
Yours,
Radioactive Girl
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