Saturday, August 22, 2009
Other People's Lives
Being someone with cancer, I can't help but feel I will always have certain regrets about my life. I have had to make decisions that no person, especially no young person has ever had to make. I have had fears hold me back from pursuing certain dreams, aspirations, relationships. Some of them are warranted. Some of them have proven to come true, justifying the hesitation. Some of them are just excuses because I lack the courage to do those things. I am constantly torn between these things. I constantly question when I make a decision whether it is a justifiable reason or just an excuse, especially if that decision is to not do something that carries some sort of risk. But then I see other people living lives that are so very different from my own. Living out the dreams that I had. Doing the things that I wanted to do. And I can't help but be jealous, and wonder what if the cancer never existed? What if the cancer wasn't a factor, would I have lived those lives, or found another reason not to? Or what if I had truly taken the stance that cancer wasn't going to interfere with my life, and did those things anyway? Would I really be any worse off?
The fact is, I'm jealous. I'm jealous of the lives my friends are living. I'm jealous of the people getting thyroid cancer now, rather than 4 1/2 years ago that are getting better treatment with more options and less risk. I'm jealous of the people who are older when they get thyca, who already have their lives set out, have families, and a stronger support system, jobs, and know who they are. I am jealous of anyone with cancer who is unafraid to live their lives on their own terms, and not by what seems prudent or reasonable.
Like most of my posts, this is something that I have been thinking about for a while now, which had its final trigger with a news article. I read the article and felt like I wanted to cry. My reaction was not one of "yay, they are improving things for people with thyca!" But rather it was, "fuck me, why couldn't this of happened 5 years ago." I went through the emotional gammit of replaying things that this kind of procedure would have saved me from. The first scar I tried to hide with a choker, the memory of the drainage tube that hung from my neck, the elbow to my friend Isaah's intestine when he tried to put me in a headlock b/c I couldn't handle an arm around my neck, the recurrences, the paralyzed vocal cord, my golf swing, the feeling in my left shoulder, chin and chest. I wonder if I had researched clinical studies at the time if I would have came across this one. A life with no scar... my voice. Wow... that did it. Spilling the words instead of keeping them in my head as images, that has made me cry. So yes, I am jealous of these people who have thyca who will never even know that these risks existed, let along have to experience them.
My first real pang of jealousy happened last week while I was hanging out with one of my best friends from high school. She just got back from the Peace Corps; just spent the last few years in Namibia. This is hard for me. Its hard because I was the one in high school who always talked about traveling, doing the peace corps, trying to organize people to backpack... but the plans fell through... I traveled on my own, but for only short stints of time. Lisa, on the other hand, got to do what I wanted to do. She just decided to go one day, and did it. Even before I got sick, my senior year in college, my parents and I consistently bickered and argued about whether or not I could do the peace corps. I've always been sick; allergies mostly, lots of sinus infections. Even before cancer, health coverage was an issue. They talked me out of the peace corps; talked me down to ameri-corps, and then in the end talked out of that for law school. I almost didn't want to hang out with Lisa, I didn't want to listen to her stories, and hear about how great her experience was. It's hard... listening to stories about a life you want. But in the end, I ended up drilling her with fifty million questions. I got my peace corps application in over the weekend. Sure, by the time I get to go it'll be 5 years later than intended, but I'll still be back before I'm 30. The only major hurdle I see is passing the the health stuff.
The other person I found myself both jealous and in awe of this week is my first boyfriend; the first kid I fell in love with. Almost 10 years later, and completely different from who he was in high school, he's still easily the most interesting person I know. And he lives this life that completely blows my mind. I remember, to our friends' irritation, we stayed a lot closer than ex'es should after we broke up; we were best friends. So I made a very purposeful effort not to apply to the same college as him; a decision that took our lives in two very different directions. He now lives in Baltimore, in an apartment with 10 other people that they use as a theater studio, putting on underground productions, and his roommates that are actors tour around the US, and other similar underground groups come and put on productions at his home. He builds sets, fills in roles once in a while. Works as a stage manager, and pulls in about $17 grand a year. And he's totally happy doing that. They are trying to get non-profit status for their theater company, and he's on his way to becoming a professional carpenter. I don't know if I could have ever been that person. To take that much of a risk. I spent hours upon hours over 2 days listening to him tell me about his life. It was sooo different and cool and artsy. And it left me questioning what exactly I would do if I absolutely didn't care what anyone thought of me. If I could totally blow off reason and responsibility, and norms. I think I would be one of those people that travel for years at a time, picking up odd jobs for a few months in random cities until they had enough money to move on. Photography would probably be my profession. I would hit up the indie art and music scene more often, but just as I passed through each place. I roomed with someone doing this life once. She had been on the road for 4 years.
I can imagine a life where I didn't get sick. Where I joined the peace corps, and something sort of snapped in my head, and I became that person who meandered around doing odd jobs and volunteer work, taught English in various countries to make ends meet (people go to cambodia all the time w/out a clue what they are doing, and pick up teaching positions... one of the highest paid things you can do there, and they desperately need teachers... the only thing that keeps me from going back is that too long there and you can't function when you come back, and I'm not big on teaching). Then the adventures and challenges in my life would be stories worth listening to, and not the gripes and pains of someone who is sick.
There's a bizarre comfort in thinking about the person I could have been. I'm not sure why but the idea that things are this way now, is due to the cancer rather than my own character flaws is somehow reassuring. It also makes me feel like, if I can still imagine that life, maybe I can still achieve some parts of it. Being sick hasn't completely quashed that part of my character. Even though I'm jealous of my friends who have already done these things, I've done a lot too. And its extra motivation for me to still live. Maybe the jealousy is good. A motivating factor. Divine intervention to get me moving.
The fact is, I'm jealous. I'm jealous of the lives my friends are living. I'm jealous of the people getting thyroid cancer now, rather than 4 1/2 years ago that are getting better treatment with more options and less risk. I'm jealous of the people who are older when they get thyca, who already have their lives set out, have families, and a stronger support system, jobs, and know who they are. I am jealous of anyone with cancer who is unafraid to live their lives on their own terms, and not by what seems prudent or reasonable.
Like most of my posts, this is something that I have been thinking about for a while now, which had its final trigger with a news article. I read the article and felt like I wanted to cry. My reaction was not one of "yay, they are improving things for people with thyca!" But rather it was, "fuck me, why couldn't this of happened 5 years ago." I went through the emotional gammit of replaying things that this kind of procedure would have saved me from. The first scar I tried to hide with a choker, the memory of the drainage tube that hung from my neck, the elbow to my friend Isaah's intestine when he tried to put me in a headlock b/c I couldn't handle an arm around my neck, the recurrences, the paralyzed vocal cord, my golf swing, the feeling in my left shoulder, chin and chest. I wonder if I had researched clinical studies at the time if I would have came across this one. A life with no scar... my voice. Wow... that did it. Spilling the words instead of keeping them in my head as images, that has made me cry. So yes, I am jealous of these people who have thyca who will never even know that these risks existed, let along have to experience them.
My first real pang of jealousy happened last week while I was hanging out with one of my best friends from high school. She just got back from the Peace Corps; just spent the last few years in Namibia. This is hard for me. Its hard because I was the one in high school who always talked about traveling, doing the peace corps, trying to organize people to backpack... but the plans fell through... I traveled on my own, but for only short stints of time. Lisa, on the other hand, got to do what I wanted to do. She just decided to go one day, and did it. Even before I got sick, my senior year in college, my parents and I consistently bickered and argued about whether or not I could do the peace corps. I've always been sick; allergies mostly, lots of sinus infections. Even before cancer, health coverage was an issue. They talked me out of the peace corps; talked me down to ameri-corps, and then in the end talked out of that for law school. I almost didn't want to hang out with Lisa, I didn't want to listen to her stories, and hear about how great her experience was. It's hard... listening to stories about a life you want. But in the end, I ended up drilling her with fifty million questions. I got my peace corps application in over the weekend. Sure, by the time I get to go it'll be 5 years later than intended, but I'll still be back before I'm 30. The only major hurdle I see is passing the the health stuff.
The other person I found myself both jealous and in awe of this week is my first boyfriend; the first kid I fell in love with. Almost 10 years later, and completely different from who he was in high school, he's still easily the most interesting person I know. And he lives this life that completely blows my mind. I remember, to our friends' irritation, we stayed a lot closer than ex'es should after we broke up; we were best friends. So I made a very purposeful effort not to apply to the same college as him; a decision that took our lives in two very different directions. He now lives in Baltimore, in an apartment with 10 other people that they use as a theater studio, putting on underground productions, and his roommates that are actors tour around the US, and other similar underground groups come and put on productions at his home. He builds sets, fills in roles once in a while. Works as a stage manager, and pulls in about $17 grand a year. And he's totally happy doing that. They are trying to get non-profit status for their theater company, and he's on his way to becoming a professional carpenter. I don't know if I could have ever been that person. To take that much of a risk. I spent hours upon hours over 2 days listening to him tell me about his life. It was sooo different and cool and artsy. And it left me questioning what exactly I would do if I absolutely didn't care what anyone thought of me. If I could totally blow off reason and responsibility, and norms. I think I would be one of those people that travel for years at a time, picking up odd jobs for a few months in random cities until they had enough money to move on. Photography would probably be my profession. I would hit up the indie art and music scene more often, but just as I passed through each place. I roomed with someone doing this life once. She had been on the road for 4 years.
I can imagine a life where I didn't get sick. Where I joined the peace corps, and something sort of snapped in my head, and I became that person who meandered around doing odd jobs and volunteer work, taught English in various countries to make ends meet (people go to cambodia all the time w/out a clue what they are doing, and pick up teaching positions... one of the highest paid things you can do there, and they desperately need teachers... the only thing that keeps me from going back is that too long there and you can't function when you come back, and I'm not big on teaching). Then the adventures and challenges in my life would be stories worth listening to, and not the gripes and pains of someone who is sick.
There's a bizarre comfort in thinking about the person I could have been. I'm not sure why but the idea that things are this way now, is due to the cancer rather than my own character flaws is somehow reassuring. It also makes me feel like, if I can still imagine that life, maybe I can still achieve some parts of it. Being sick hasn't completely quashed that part of my character. Even though I'm jealous of my friends who have already done these things, I've done a lot too. And its extra motivation for me to still live. Maybe the jealousy is good. A motivating factor. Divine intervention to get me moving.
Wednesday, August 19, 2009
Health Update
YAY No lupus!
Boo Erythema multiforme.
Its basically a hypersensitivity reaction that has 25+ causes.
There is an overwhelming irony that I, of all people, have a hypersensitivity disease. I'm pretty sure I have a handful of ex boyfriends that would dispute such a diagnosis... And it blatantly flies in the face of my Myers-Briggs INTP personality.
Of course when I went to see the dermatologist yesterday, I had no welts... today... my arm has a softball sized group of them. I can't imagine trying to date while I look like I have the plague... its irritating. I don't even want to be out in public.
The main cause is herpes. I don't have herpes. I dislike doctors who turn Spanish inquisition on me about having herpes, and I'm pretty sure mom is convinced I must have it as well, which means that's what she's told the rest of the family. She ignores the other 24+ causes, and that herpes only causes about 50% of cases. Though fever blister herpes might also be a cause. Along w/ basically everything else on the planet. From bug bites, to a lingering virus or parasite that I may have picked up traveling. My favorite cause is this:
"Physical/mechanical factors (tattooing, radiotherapy, cold, sunlight, contactants)"
I think I nearly died of psychotic laughter when I read that.
But basically the doc said there's nothing they can do for me. Gave me a Rxn for a topical antihistamine. Told me they use steroids to calm it down, but it loses its effectiveness. People tend to break out 5-7 times. It could be in a year, could be over a lifetime. The best thing to do is figure out what my trigger is. They can run blood work w/ the next outbreak, but it will be expensive. I just need to keep a journal of things. I'm pretty sure I've developed a particular glare for doctors when I find them annoyingly unhelpful.
Sigh. I would really like to enjoy some bit of this summer, but I'm having trouble even trying to make big plans, like a trip, as I'm afraid it will go terribly wrong.
Boo Erythema multiforme.
Its basically a hypersensitivity reaction that has 25+ causes.
There is an overwhelming irony that I, of all people, have a hypersensitivity disease. I'm pretty sure I have a handful of ex boyfriends that would dispute such a diagnosis... And it blatantly flies in the face of my Myers-Briggs INTP personality.
Of course when I went to see the dermatologist yesterday, I had no welts... today... my arm has a softball sized group of them. I can't imagine trying to date while I look like I have the plague... its irritating. I don't even want to be out in public.
The main cause is herpes. I don't have herpes. I dislike doctors who turn Spanish inquisition on me about having herpes, and I'm pretty sure mom is convinced I must have it as well, which means that's what she's told the rest of the family. She ignores the other 24+ causes, and that herpes only causes about 50% of cases. Though fever blister herpes might also be a cause. Along w/ basically everything else on the planet. From bug bites, to a lingering virus or parasite that I may have picked up traveling. My favorite cause is this:
"Physical/mechanical factors (tattooing, radiotherapy, cold, sunlight, contactants)"
I think I nearly died of psychotic laughter when I read that.
But basically the doc said there's nothing they can do for me. Gave me a Rxn for a topical antihistamine. Told me they use steroids to calm it down, but it loses its effectiveness. People tend to break out 5-7 times. It could be in a year, could be over a lifetime. The best thing to do is figure out what my trigger is. They can run blood work w/ the next outbreak, but it will be expensive. I just need to keep a journal of things. I'm pretty sure I've developed a particular glare for doctors when I find them annoyingly unhelpful.
Sigh. I would really like to enjoy some bit of this summer, but I'm having trouble even trying to make big plans, like a trip, as I'm afraid it will go terribly wrong.
Thursday, August 13, 2009
Yesterday's Post Revisited
I've had time to think from yesterday's rant. I've also had to sit an have dinner with a family who can only think to talk to me about being sick, what they think I have, and how they still say that it is stress, (this is my step-dad's family). His mom had thyroid cancer, but we don't relate to each other at all on anything. She tends to assume everything my doctors do is the wrong procedure, etc, while her docs, from what I can tell haven't changed their ways in 10-15 years. Its very strange to me to actually have someone in my life that I should be able to bond with, or find comfort from, but I really really don't. Outside of this blog, I don't like to talk about being sick. I have other things in my life. But I'm getting side-tracked.
I half jokingly, half seriously, keep saying that maybe I really am just having a bad reaction to bug bites. And at some point my mom snapped back at me to stop humoring her. And for the first time, I realized that it wasn't just that my parents believed everything was in my head... they WANTED it to all be in my head.
For me, I guess this is the biggest divergence between being the sick and the people around the sick. I can't think of anything worse than it all being in my head, a side-effect of stress. It reflects personal weakness. If its a disease, yeah, that sucks, but please don't let there be something wrong with my brain.
For everyone else, a disease is something else they have to sit through, and wait. I understand that me being sick is hard on everyone. But I know I can deal with it. If something is wrong with my head... that is where I would feel totally helpless. I wish that my family could be stronger in dealing with things; hold it together, rather than making me do it.
And that's why when my mom asked what sort of blood work they did today, I lied and said they were just tests, didn't pay attention to what they were for.
My feigned indifference earns me a bad reputation when it comes whether my mom thinks I can take care of myself; its like the lump during graduation. I would rather her think me incompetent than worry to the point where I have to give her support.
Which brings us to today's story about how thrilled I am w/ the medical community. I called my doc yesterday about the rash coming back. Nurse calls me this morning and is like, either make an appointment or schedule w/ dermatologist. So I schedule w/ dermatologist; the earliest they can see me is Tuesday. I figure I need to be looked at today. Get to my doctor, she's going through the charts... turns out, no one gave her yesterdays message. She was FUMING. My personal displeasure was suddenly eased. That is until blood work time.
The nurse was new. Probably the same one who fucked my message. The first thing she said, "you have small veins." She tried to find my veins BY LOOKING. HAHAHAHAHAHA... she looked at my WRIST! I was like... no you aren't sticking me there. I don't care where you had to do it earlier. NO ONE has ever tried to stick my wrist. She stuck me, got a bleeder, and then fumbled around w/ the tube, and pulled the needle out. I've never seen a more clumsy nurse. The others were there when I went to sit in the waiting room. They were there for about 5 minutes, and opted to go to lunch instead of taking care of me. I had to wait till they got back. The third nurse ended up getting me. 6 sticks today. Not a record. But really annoying. I also didn't know that other people could see the scar tissue in my elbows. One nurse walked by and looked down, and said, see where the scar tissue is, go down there straight and hard, it'll be deep. She was right. Once these new pokes heal I'm curious to see if the scar tissue is really that noticeable.
My doctor wanted to run one more test on me, just to rule out autoimmune problems. Specifically to rule out lupus. Wow. She's good. Presenting an issue as something to rule out, is good. So much better than saying, "so it could be lupus, so we need to run that test." In my own stupidity, I looked up pictures of skin lupus, and how it can be triggered by stress. Some, not all, but enough of the pictures looked familiar enough for me to say that I may be a bit more scared than I'm willing to tell anyone I know. So I lied to my mom. "Just another test, don't know what for." It isn't lupus. It can't be. I'm about an hour away from finishing up my Peace Corps application. This can't be anything more than a bad reaction to some bug bites.
What I need is for them to find something minor and treatable wrong. No more mystery disease, nothing in my head, nothing life altering. I don't feel like that's a particularly frivolous request from the great cosmos right now.
I half jokingly, half seriously, keep saying that maybe I really am just having a bad reaction to bug bites. And at some point my mom snapped back at me to stop humoring her. And for the first time, I realized that it wasn't just that my parents believed everything was in my head... they WANTED it to all be in my head.
For me, I guess this is the biggest divergence between being the sick and the people around the sick. I can't think of anything worse than it all being in my head, a side-effect of stress. It reflects personal weakness. If its a disease, yeah, that sucks, but please don't let there be something wrong with my brain.
For everyone else, a disease is something else they have to sit through, and wait. I understand that me being sick is hard on everyone. But I know I can deal with it. If something is wrong with my head... that is where I would feel totally helpless. I wish that my family could be stronger in dealing with things; hold it together, rather than making me do it.
And that's why when my mom asked what sort of blood work they did today, I lied and said they were just tests, didn't pay attention to what they were for.
My feigned indifference earns me a bad reputation when it comes whether my mom thinks I can take care of myself; its like the lump during graduation. I would rather her think me incompetent than worry to the point where I have to give her support.
Which brings us to today's story about how thrilled I am w/ the medical community. I called my doc yesterday about the rash coming back. Nurse calls me this morning and is like, either make an appointment or schedule w/ dermatologist. So I schedule w/ dermatologist; the earliest they can see me is Tuesday. I figure I need to be looked at today. Get to my doctor, she's going through the charts... turns out, no one gave her yesterdays message. She was FUMING. My personal displeasure was suddenly eased. That is until blood work time.
The nurse was new. Probably the same one who fucked my message. The first thing she said, "you have small veins." She tried to find my veins BY LOOKING. HAHAHAHAHAHA... she looked at my WRIST! I was like... no you aren't sticking me there. I don't care where you had to do it earlier. NO ONE has ever tried to stick my wrist. She stuck me, got a bleeder, and then fumbled around w/ the tube, and pulled the needle out. I've never seen a more clumsy nurse. The others were there when I went to sit in the waiting room. They were there for about 5 minutes, and opted to go to lunch instead of taking care of me. I had to wait till they got back. The third nurse ended up getting me. 6 sticks today. Not a record. But really annoying. I also didn't know that other people could see the scar tissue in my elbows. One nurse walked by and looked down, and said, see where the scar tissue is, go down there straight and hard, it'll be deep. She was right. Once these new pokes heal I'm curious to see if the scar tissue is really that noticeable.
My doctor wanted to run one more test on me, just to rule out autoimmune problems. Specifically to rule out lupus. Wow. She's good. Presenting an issue as something to rule out, is good. So much better than saying, "so it could be lupus, so we need to run that test." In my own stupidity, I looked up pictures of skin lupus, and how it can be triggered by stress. Some, not all, but enough of the pictures looked familiar enough for me to say that I may be a bit more scared than I'm willing to tell anyone I know. So I lied to my mom. "Just another test, don't know what for." It isn't lupus. It can't be. I'm about an hour away from finishing up my Peace Corps application. This can't be anything more than a bad reaction to some bug bites.
What I need is for them to find something minor and treatable wrong. No more mystery disease, nothing in my head, nothing life altering. I don't feel like that's a particularly frivolous request from the great cosmos right now.
Wednesday, August 12, 2009
Well Kiss my Grits!
This particular rant is coming to you after nearly a week of diffusing some pretty harsh language and feelings. This is a rant dedicated to every person who has had to deal with diseases that have nothing to do with cancer. For everyone who has had friends or family who just don't quite get it.
As I explained two weeks ago, my hand swelled up and I had sort of a weird rash start during the bar exam. They put me on a 12 day steroid pack to stop the rash. Instead of being super wired and awake, I slept. I didn't want to get out of bed. I went to the gym to work w/ my trainer, ran for a few minutes, tried lifting, then nearly blacked out. I spent most of last week in a state where... that feeling you get when you stand up too fast, and the blood rushes to your head and it gets sort of dark for a second, then your ears ring... except it didn't exactly go away. The general reaction all around seemed to be that it was due to stress. And then there was my mom... my lovely mother. "You are just depressed because you don't think you passed the bar exam." "You're tired because you aren't eating right." "You need to be out seizing life." "You are doing this to yourself." There was one point where I came downstairs, and I was like, my fever is back up over 99, mom felt me and told me, "no, your too cold." And I just sort of stared at her like.... I clearly just used a thermometer...
And everyone knew that this is what my mom believed. Even my hair dresser knew about the rash. And she kept telling everyone it was spider bites, even though the doc pretty much ruled those out a while ago. So everyone kept telling me, "oh still having a reaction to the stress." As a lawyer I almost want to be like, defamation of character... now everyone believes I'm so weak I crack under the stress of a test.
And so, I fell down a slippery path. I started believing everyone telling me that I felt like crap because of stress. I thought maybe in fact I was seriously depressed. Basically I thought I was going nuts. But for as loud as that voice was for me, the voice in my head going... "You've been through fucking 5 years of cancer plus law and grad school at the same time, you do NOT fucking crack under pressure," sort of came out even louder. Then I looked at what my mom was saying to me. I think that on my mom's side of the family, they think saying really nasty things is something that gives people motivation. Which I guess works to a certain extent except when it results in completely mutilating self-esteem. But I got a lot of comments about my lack of initiative, how it was all in my head, how I would make a horrible mother because if my kids ever needed anything I wouldn't be able to provide even rides for them because I didn't feel well. And so it dawned on me, about mid way through last week, that if I were in fact doing this to myself and really depressed, then my mom would definitely make it worse rather than better. And I would be getting worse each day, rather than pulling out a little more each day. So mentally, that was a good realization for me.
And then the blood work came back the next day. Everything seemed more or less normal, but my white count was up a little high, the doc said the numbers looked like a combination of the steroids and what it should look like if I were fighting an infection. When this got mentioned at dinner, my step dad's reaction basically solidified the fact that everyone thought I had caused this to myself... "So wait... you have an infection?"
[Directed towards my family support system] WHY YES ladies and gentlemen, the kid is in fact not fucking crazy, but did actually pick up "something" that has been provoking a response from her immune system. It is not all in her mind, she did NOT magically create the little target like welts consuming her arms. And in reality, she probably was having a very bad reaction to steroids, seeing as she doesn't seem to tolerate a lot medications. Thank you ALL for you lovely support. Just in case I ever do go through any sort of major depression, I will be sure to turn to you all for that extra push over the edge. I hope you all feel like giant douche bags for being such ass holes about whether or not I "really" felt like crap.
I had every intention of writing this rant that night. But thought I should cool off. I still can't believe after everything I've been through, they still treat me like I don't know how to handle myself. I think they think I soak in the attention. I don't. I don't want anyone to know when I don't feel well, I don't want anyone to bother me. I feel awkward complaining. I still have a hard time with acknowledging that when I get sick, I don't bounce back the way I did before cancer. So I guess its even harder for them to understand that. They just see a needy 26 year old, who complains when the get sick. I wish there a way that you could touch someone and for an instant they feel exactly how you feel and back off. Maybe the next time I go to the doctor I'll tell them to tell my parents straight up what happens to a body's ability to bounce back after radiation and surgeries.
So why the rant now?
Yesterday was my first full day off of the steroids. Today I woke up w/ three large welts (one of which had been there for a couple days, but thought it was just an awkward bite). They are all about an inch and a half in diameter, raised, swollen, hard as a rock. All right, fine. I can handle this. I need to see a proper dermatologist. If its still the infection, they can deal with it. Even if it isn't, even if its just bug bites, I'm clearly having allergic reactions to bug bites, and that's something that should be addressed. Otherwise I feel fine. I've been up and about since Friday. Spent pretty much everyday out on the beach, hiking, etc (hence no blog posts... didn't really feel like sitting down and writing). So, just massive swollen welts.
My step dad's reaction, "well, I guess we can rule out stress as the cause."
No f*ing shit Sherlock!
As I explained two weeks ago, my hand swelled up and I had sort of a weird rash start during the bar exam. They put me on a 12 day steroid pack to stop the rash. Instead of being super wired and awake, I slept. I didn't want to get out of bed. I went to the gym to work w/ my trainer, ran for a few minutes, tried lifting, then nearly blacked out. I spent most of last week in a state where... that feeling you get when you stand up too fast, and the blood rushes to your head and it gets sort of dark for a second, then your ears ring... except it didn't exactly go away. The general reaction all around seemed to be that it was due to stress. And then there was my mom... my lovely mother. "You are just depressed because you don't think you passed the bar exam." "You're tired because you aren't eating right." "You need to be out seizing life." "You are doing this to yourself." There was one point where I came downstairs, and I was like, my fever is back up over 99, mom felt me and told me, "no, your too cold." And I just sort of stared at her like.... I clearly just used a thermometer...
And everyone knew that this is what my mom believed. Even my hair dresser knew about the rash. And she kept telling everyone it was spider bites, even though the doc pretty much ruled those out a while ago. So everyone kept telling me, "oh still having a reaction to the stress." As a lawyer I almost want to be like, defamation of character... now everyone believes I'm so weak I crack under the stress of a test.
And so, I fell down a slippery path. I started believing everyone telling me that I felt like crap because of stress. I thought maybe in fact I was seriously depressed. Basically I thought I was going nuts. But for as loud as that voice was for me, the voice in my head going... "You've been through fucking 5 years of cancer plus law and grad school at the same time, you do NOT fucking crack under pressure," sort of came out even louder. Then I looked at what my mom was saying to me. I think that on my mom's side of the family, they think saying really nasty things is something that gives people motivation. Which I guess works to a certain extent except when it results in completely mutilating self-esteem. But I got a lot of comments about my lack of initiative, how it was all in my head, how I would make a horrible mother because if my kids ever needed anything I wouldn't be able to provide even rides for them because I didn't feel well. And so it dawned on me, about mid way through last week, that if I were in fact doing this to myself and really depressed, then my mom would definitely make it worse rather than better. And I would be getting worse each day, rather than pulling out a little more each day. So mentally, that was a good realization for me.
And then the blood work came back the next day. Everything seemed more or less normal, but my white count was up a little high, the doc said the numbers looked like a combination of the steroids and what it should look like if I were fighting an infection. When this got mentioned at dinner, my step dad's reaction basically solidified the fact that everyone thought I had caused this to myself... "So wait... you have an infection?"
[Directed towards my family support system] WHY YES ladies and gentlemen, the kid is in fact not fucking crazy, but did actually pick up "something" that has been provoking a response from her immune system. It is not all in her mind, she did NOT magically create the little target like welts consuming her arms. And in reality, she probably was having a very bad reaction to steroids, seeing as she doesn't seem to tolerate a lot medications. Thank you ALL for you lovely support. Just in case I ever do go through any sort of major depression, I will be sure to turn to you all for that extra push over the edge. I hope you all feel like giant douche bags for being such ass holes about whether or not I "really" felt like crap.
I had every intention of writing this rant that night. But thought I should cool off. I still can't believe after everything I've been through, they still treat me like I don't know how to handle myself. I think they think I soak in the attention. I don't. I don't want anyone to know when I don't feel well, I don't want anyone to bother me. I feel awkward complaining. I still have a hard time with acknowledging that when I get sick, I don't bounce back the way I did before cancer. So I guess its even harder for them to understand that. They just see a needy 26 year old, who complains when the get sick. I wish there a way that you could touch someone and for an instant they feel exactly how you feel and back off. Maybe the next time I go to the doctor I'll tell them to tell my parents straight up what happens to a body's ability to bounce back after radiation and surgeries.
So why the rant now?
Yesterday was my first full day off of the steroids. Today I woke up w/ three large welts (one of which had been there for a couple days, but thought it was just an awkward bite). They are all about an inch and a half in diameter, raised, swollen, hard as a rock. All right, fine. I can handle this. I need to see a proper dermatologist. If its still the infection, they can deal with it. Even if it isn't, even if its just bug bites, I'm clearly having allergic reactions to bug bites, and that's something that should be addressed. Otherwise I feel fine. I've been up and about since Friday. Spent pretty much everyday out on the beach, hiking, etc (hence no blog posts... didn't really feel like sitting down and writing). So, just massive swollen welts.
My step dad's reaction, "well, I guess we can rule out stress as the cause."
No f*ing shit Sherlock!
Tuesday, August 4, 2009
How far should we be monitored?: #2 Bloodwork
After going through the laundry list of side-effects, a lot of stuff that are just immediate and short term can easily be crossed out. But there are still some pretty big things on the list, where a little follow-up could go a long way in improving how we feel.
I've done a lot of thinking over the past few days of why we don't present every symptom to doctors, and why its so frustrating to learn about things from other people w/ the same experiences. For me personally, the biggest issue has actually been an age thing. We are brought up with the common knowledge that between 20-27ish, everything changes, body wise. You slow down, you gain weight, your brain slows, metabolism changes, you find yourself getting... well, old. So if you are diagnosed at 21 w/ cancer, how do you tell the difference? And that's where I think that doctors should really step in, especially with young adults who don't have a clue about how their bodies will age. And I think doing blood work may be one of the easiest ways to make sure that things are in check and balanced.
We already have to do blood work on a regular basis as it is. TSH, T4, Thyroglobulin. But has your doctor ever tested you for any of the deficiencies that are associated w/ losing your thyroid? What about for the anemia or leukemia that has been associated w/ I-131?
T3 and T4 testing:
Most of us are on something like levoxyl or synthroid, which are T4 replacements. If you've done the slightest bit of research into medications, you probably have also heard of Armour, which is a natural T3 and T4 replacement, or you've heard of people who use a combination T4 w/ cytomel (t3). Personally, I'm a big chicken. I've heard so many conflicting sides to whether its worth using both, and then hearing about how hard it is to regulate levels on Armour, its hard to tell what to do w/ out some solid medical evidence that it would be good for me to do both.
Test: From what I've gathered, most blood work tests for thyroid hormone totals in the blood. But some hormones can be bound and unusable. So the recommendation is to test for free T3 and free T4. In case of things like, your body has trouble converting T4 to T3. I never knew this, but can guarantee it will be one of the big things on my list of things to ask about in the near and dear future.
Vitamin D:
This is absolutely huge right now, and not just for thyroid patients. Everyone is talking about vitamin D deficiencies. And apparently its something that requires more than just standing outside for 15 minutes every day. I just had to do blood work yesterday concerning my mysterious rash (don't get me started), and while we were at it, she said she wanted to run the gamit of blood work, check my thyroid levels, and I asked if she could do vitamin D. Its been on my mind; and to my surprise she agreed %100. She confirmed that she'd been seeing a lot of thyroid patients with D levels of 4 when they should be 30. And it was comforting to talk to her about the the testing because I saw that she had that familiar scar. So suddenly we were on equal playing fields; she knew my concerns as more than a doctor, and she fully understood the issues of deciding what was life changes vs. medical issues that needed to to be talked about.
Calcium:
I remember when I first had surgery, they put me on calcium pills for a while. But after that, nothing. Does anyone out there regularly get their calcium tested? Or is this just if they think that your parathyroids may have been damaged?
Anemia:
I only recently learned that I-131 can in fact cause anemia. Its also one of the things they are running for me. I thought this just happened if you didn't eat enough iron and protein. Girls have a harder time with it. Etc. Because it is something that tends to be so common, outside of thyroid problems, why isn't it just a normal part of blood tests?
Leukemia:
This is the last major thing that comes to my mind when we talk about post treatment blood work. I don't have a clue what I would look for if I were worried about leukemia, or any other new possible cancers. From what I can tell the symptoms are like being hypo, or being generally really run down. If there is anyone out there who has had this experience, I ask that you share. I don't think I've found anyone online who talks about this particular side-effect, how it was diagnosed, follow-up or anything like that.
I'm sorry this turned out to be a little more theoretical than I had originally intended. I know I asked more questions than I wanted; but that's why I'm writing on the topic. Is it crazy to want the doctors to run all these tests on your blood? Would it make life a lot easier if they could medically tell me that there is a reason I don't feel 100%? Can we as patients be trusted to truly evaluate how our bodies feel?
I was thinking maybe a chart would be useful for bloodwork. I remember calcium and leukemia being short term concerns. Having a chart that you can look at and say, ok, for the next 2 months I should get these tests, or be aware of these symptoms. It's simple, its basic, its a little piece of mind. A lot of doctors tell patients to keep journals of their blood levels, but rarely give you the exact numbers for every single test. Wouldn't it be even easier to just have something pre-set up to print out, and plug numbers in. It could be something the doctor provides, or even Thyca. A list of things that are generally tested, and what amounts they should be in, and then empty blocks to write your own numbers in. Again, it sounds so stupidly easy. And like its something that I should have done all along. But if there were such a document that were universal, that contained EVERYTHING doctors should be monitoring, I can only imagine that that might start standardizing levels of care. Imagine that, every doctor performing the same tests.
I've done a lot of thinking over the past few days of why we don't present every symptom to doctors, and why its so frustrating to learn about things from other people w/ the same experiences. For me personally, the biggest issue has actually been an age thing. We are brought up with the common knowledge that between 20-27ish, everything changes, body wise. You slow down, you gain weight, your brain slows, metabolism changes, you find yourself getting... well, old. So if you are diagnosed at 21 w/ cancer, how do you tell the difference? And that's where I think that doctors should really step in, especially with young adults who don't have a clue about how their bodies will age. And I think doing blood work may be one of the easiest ways to make sure that things are in check and balanced.
We already have to do blood work on a regular basis as it is. TSH, T4, Thyroglobulin. But has your doctor ever tested you for any of the deficiencies that are associated w/ losing your thyroid? What about for the anemia or leukemia that has been associated w/ I-131?
T3 and T4 testing:
Most of us are on something like levoxyl or synthroid, which are T4 replacements. If you've done the slightest bit of research into medications, you probably have also heard of Armour, which is a natural T3 and T4 replacement, or you've heard of people who use a combination T4 w/ cytomel (t3). Personally, I'm a big chicken. I've heard so many conflicting sides to whether its worth using both, and then hearing about how hard it is to regulate levels on Armour, its hard to tell what to do w/ out some solid medical evidence that it would be good for me to do both.
Test: From what I've gathered, most blood work tests for thyroid hormone totals in the blood. But some hormones can be bound and unusable. So the recommendation is to test for free T3 and free T4. In case of things like, your body has trouble converting T4 to T3. I never knew this, but can guarantee it will be one of the big things on my list of things to ask about in the near and dear future.
Vitamin D:
This is absolutely huge right now, and not just for thyroid patients. Everyone is talking about vitamin D deficiencies. And apparently its something that requires more than just standing outside for 15 minutes every day. I just had to do blood work yesterday concerning my mysterious rash (don't get me started), and while we were at it, she said she wanted to run the gamit of blood work, check my thyroid levels, and I asked if she could do vitamin D. Its been on my mind; and to my surprise she agreed %100. She confirmed that she'd been seeing a lot of thyroid patients with D levels of 4 when they should be 30. And it was comforting to talk to her about the the testing because I saw that she had that familiar scar. So suddenly we were on equal playing fields; she knew my concerns as more than a doctor, and she fully understood the issues of deciding what was life changes vs. medical issues that needed to to be talked about.
Calcium:
I remember when I first had surgery, they put me on calcium pills for a while. But after that, nothing. Does anyone out there regularly get their calcium tested? Or is this just if they think that your parathyroids may have been damaged?
Anemia:
I only recently learned that I-131 can in fact cause anemia. Its also one of the things they are running for me. I thought this just happened if you didn't eat enough iron and protein. Girls have a harder time with it. Etc. Because it is something that tends to be so common, outside of thyroid problems, why isn't it just a normal part of blood tests?
Leukemia:
This is the last major thing that comes to my mind when we talk about post treatment blood work. I don't have a clue what I would look for if I were worried about leukemia, or any other new possible cancers. From what I can tell the symptoms are like being hypo, or being generally really run down. If there is anyone out there who has had this experience, I ask that you share. I don't think I've found anyone online who talks about this particular side-effect, how it was diagnosed, follow-up or anything like that.
I'm sorry this turned out to be a little more theoretical than I had originally intended. I know I asked more questions than I wanted; but that's why I'm writing on the topic. Is it crazy to want the doctors to run all these tests on your blood? Would it make life a lot easier if they could medically tell me that there is a reason I don't feel 100%? Can we as patients be trusted to truly evaluate how our bodies feel?
I was thinking maybe a chart would be useful for bloodwork. I remember calcium and leukemia being short term concerns. Having a chart that you can look at and say, ok, for the next 2 months I should get these tests, or be aware of these symptoms. It's simple, its basic, its a little piece of mind. A lot of doctors tell patients to keep journals of their blood levels, but rarely give you the exact numbers for every single test. Wouldn't it be even easier to just have something pre-set up to print out, and plug numbers in. It could be something the doctor provides, or even Thyca. A list of things that are generally tested, and what amounts they should be in, and then empty blocks to write your own numbers in. Again, it sounds so stupidly easy. And like its something that I should have done all along. But if there were such a document that were universal, that contained EVERYTHING doctors should be monitoring, I can only imagine that that might start standardizing levels of care. Imagine that, every doctor performing the same tests.
Labels:
Bloodwork,
Check-ups,
Detection,
Fixing Side-Effects,
Side Effects,
Side-effects,
T3,
T4
Saturday, August 1, 2009
Life outside of cancer can still be a GIANT pain in the ass
And now post two of "So overwhelmingly much I'd like to blog about today"... had a lot to think about as I was taking the biggest most important test ever.
First, there's the idea of how I deal with stress quasi-post thyca. I get high strung on little itty bitty things. Big things, don't phase me. Is that weird? Is that normal? Is it bad that I went into the test going, meh... I can always take it again in February and won't have to hike out to the bum-fuck middle of nowhere to do so (I apologize now to all readers who live in the country/mountains/deserts/west Virginia or western Virginia... i tend to prefer a few more people in my life, and don't understand why the bar exam was only being held in one location for all of Virginia.... no really... Roanoke... only about 28,000 people, I think that's the size of my college... then suddenly you have 2,000+ lawyers there... terrifying). Anywho... the whole experience has taught me a lot about my personal limits on what I can and can't handle in life... all the way down to having some... interesting... stories to go along with it.
To begin... Let me take you back to Saturday. I'm driving down the interstate to go to the place I like to study... there are a few logs on the road... on the very busying interstate. Two directly in my lane... I miss one while hitting the other... a third in front of me, i swerve slightly, but not enough to go in the other lanes, as the cars on both sides of me are also dodging similar logs of wood. Then two lanes to my right an suv hits a log kicking it up about three feet in the air. It misses the car in the lane next to me, and all i can do is watch this thing propel towards me like a helicopter... I brace... I wonder if the bar examiners would waive the fee for February's bar exam if I can't make it there this week... the brick of wood hits the front of my car... the horizontal propelling spins it to the right side (versus vertical propelling which would have popped it up into my windshield... i can visualize stuff like that as long as you don't ask me to do the math)... I get to my destination and survey the damage. Headlight crushed in along with a few inches of my hood. Didn't get to drive my car to the Bar... frustrating. Damage estimate: $1,200, thank god for auto insurance. It should be pointed out at this point that I'm not used to auto accidents. I've been driving for 11 years now without much issues. Since January, I've had a rock kick up shattering my windshield, been rear ended (last month), and now this. It wore on my nerves to say the least.
The route to Roanoke involves going up and over the middle of the state. No joke, here is the map...
View Larger Map
No matter what you believe... this blows all common sense.
I stayed at the worlds most sketchy Ramada. In my experience, Ramada's are usually nice. Apparently I was wrong. I'm cool w/ sketchy places to sleep. I'm a backpacker; its what I do. I saved over $100 staying here. That should have been my first clue. Little things, like the outdoor pool, the lack of promised fitness center and spa, no restaurant... outdoor rooms... the blow dryer that didn't work, after a while they do get to you. But no biggie, shrugged it off.
The itching began around 1 on Tuesday. I was sitting in my car during lunch. I had just completed the first quarter of the bar exam. It was my right hand. Itch. Itch. Itch. It looked more like a flat welt than a bug bite. Oh well, I thought. I've been having worse reactions to bug bites in the last couple years or so. The itching continued during the second session of the exam. Oh, I'm in a full suit by the way; its a requirement. The underside of my chin started itching. I'm trying to write essays, w/ my hand and neck just itching uncontrollably. Day 1 ends. Go back to sketchmada.
At one point I went to get ice. I step outside; I'm in my pajamas (high school powderpuff t-shirt and yoga pants... hot). Its the kind of hotel where the doors are outside. I'm holding the ice bucket. Its outside of town. There are mountains... but all you can see is the faint red blinking lights at the top. I'm a big wuss... decided this was far too much like a horror movie for comfort... not to mention its a hotel full of lawyers. RUN back to my room. Ice is never gotten.
3 more welts show up that night.
In the morning, there is another on my face.
During the exam, I watch my hand grow. It was like the reaction to the MRI dye. First thing to go was the bones in my hand. During lunch, I checked out the other welts. They all had centers w/ rims. My only other experience w/ that was last year when I had an allergic reaction to a bee sting. I watched my hand through the second half of my exam wondering if I should actually be in an emergency room. Where is the line? At what point do you give up on the most important exam you will ever take because damn... that just ain't supposed to happen to your hand. At this point I was thinking a good deal about Kairol's post about working when you are sick. My right eye, the one I had surgery one, started watering again... now of all times. My nightmare about not really remembering the last half of the MBE (multi-state Bar exam)... sort of came true... I was definitely more focused/worried about what was going on w/ my hand. But I was stoic.
I came back to sketch-mada, talked to a few people. Made jokes about how it took the pressure off. Gave me something else to focus on. Claimed I looked like I had one of the Egyptian plagues, boils to be exact. This would not be as funny the next days.
(This story does have a point, I swear)
Next morning. Lots more welts, though they seemed much more bug bite like and less welty... at least at that point. Hand... well... I couldn't see two of my knuckles. Doctor appointment scheduled. Just needed to get back to Va Beach by 4:15.
I detoured. Hell if i was going to be all the in po-dunk no where w/ out seeing a few things. My hand be damned. I stopped off at one of the 7 natural wonders of the modern world; the Virginia land bridge. It was pretty awesome, but rediculously expensive. I took the $18 I paid to see a giant bridege of rock, and went ahead and wandered the whole nature trail checking out a few caves, a mock indian village and some waterfalls. Of course it was a miserably grey and humid day and on the verge of rain. To give you an idea of how imulsive I am about these kinds of things, here's how i'm dressed: kahkis, black clingy/shiny tank top, flippy-floppies, key's wallet just hanging from my pocket, as I had no purse, and my big new camara, which I swore if it started raining I would strip off my shirt to wrap it in to save it. Once I accepted that I didn't think it would be the end of the world if i didn't make it home for my doctor appointment, this became the most fun party of my trip. I loved the spontenaity and the peacefulness of it. I loved that there was a was cowboy riding a raptor. That alone made the detour well worthwhile. I'll add in pictures once I get around to loading and editing.
I made it to the doctor's office with minutes to spare. I feel that nothing is as awkward as even the nurses staring at you because of the welts on your arms face and chest. I got led back, and was waiting for the doctor, and there was just this collapse. And i just started balling my eyes out. There was nothing I could do to stop. I had just sat for the most important test of my life and distinctly felt like I failed, and thne watched as my hand near doubled in size, and that wasn't right, and now medical professionals where just staring at me. It was like everything that has happened in the past months just crumbled down. I had no reason to hold it together anymore.
Its amazing how we do this. Cancer patients in particular. Everyone asks how we can be so strong. How we can still live our lives when everything is going horribly wrong. How we keep it together. And I believe its because we have no choice. Not one of us believes that cancer is the end of our lives, or at minumum we cling to the hope that it isn't. We don't want things on hold. I want to get through what needs to be done so I can pick up the pieces later and move on. My mom said when I got home if the swelling had happened two days earlier, that would have been it... the last straw for me and the exam. I'm not so sure. I still don't feel great about how I did on the test, but I did it.
I tried to say tell the doctor that I thought it was an allergic reaction to a spider bite... or maybe bed bugs... though there weren't any tracts. They didn't agree. Another doctor called in. Its weird because its all over my main exposed areas, and no where else. It isn't hives b/c they have little heads. "I would say that it was shingles, but it is on both sides of your body." I think that was my favorite line. I know what shingles is. I don't want shingles. It might be any number of different types of rashes. They broke out a book and started comparing pictures. Nothing I had looked that bad, they said maybe it's mild, or early. There was an awkward question of whether I have herpes b/c a similar rash could follow an outbreak... uh, no. And then it was decided to just put me on steroids to bring down the swelling and stop the spread. Narcotics to stop the pain. I go in Monday to see if once the swelling is gone they can tell a little bit better what they are dealing with.
In the meantime, I'm to pay attention to if my fever goes up (I had just a low grade fever). If i feel things in my mouth. If the welts turn to boils and fill with pus. I should expect the swelling in my hand to get better before worse.
This is supposed to be the weekend I drink myself senseless and just not move and relax for the first time in months. Fuck.
More welts yesterday. On my toes, and 2 on my tummy. Great. New regions. I found a bug on my bed, here, at home, crawling in front of me. Grabbed and squeazed; it exploded w/ blood. Fantastic.
The fever went up, but down again, depending of if i'm upright. Steriods make me sort of jittery, the narcotic is non-codine based... so for the first time I'm not sick as a dog on pain meds.
I have an odd reaction to bugs. I'm not afraid of bugs... except milipedes, those things are terrifying and fast. I know i'm allergic to certain things, like spiders, but I live by a don't hurt them and they eat everything else mentality. At the same time, when you get to that place where you aren't exactly awake, and you aren't exactly asleep, the things that i see there are bugs. Spiders, beatles, mites. When I feel particularly guilty about things, I see fruit flies flying around me. When I was in SE asia, and on the malaria pill, methloquin, I hallucinated about bugs. And then w/ a 105 degree fever... bugs. So, when I'm all together I'm fine. When i'm borderline paranoid, I'm edgy about bugs. And its driving me insane now as I'm paying attention to ever little thing that brush my leg. I just want to fill a bathtub, grab my snorkle and just sit underwater for like an hour in case there is anything thinking it can live somewhere on me.
I woke up today to 3 more welts.
First, there's the idea of how I deal with stress quasi-post thyca. I get high strung on little itty bitty things. Big things, don't phase me. Is that weird? Is that normal? Is it bad that I went into the test going, meh... I can always take it again in February and won't have to hike out to the bum-fuck middle of nowhere to do so (I apologize now to all readers who live in the country/mountains/deserts/west Virginia or western Virginia... i tend to prefer a few more people in my life, and don't understand why the bar exam was only being held in one location for all of Virginia.... no really... Roanoke... only about 28,000 people, I think that's the size of my college... then suddenly you have 2,000+ lawyers there... terrifying). Anywho... the whole experience has taught me a lot about my personal limits on what I can and can't handle in life... all the way down to having some... interesting... stories to go along with it.
To begin... Let me take you back to Saturday. I'm driving down the interstate to go to the place I like to study... there are a few logs on the road... on the very busying interstate. Two directly in my lane... I miss one while hitting the other... a third in front of me, i swerve slightly, but not enough to go in the other lanes, as the cars on both sides of me are also dodging similar logs of wood. Then two lanes to my right an suv hits a log kicking it up about three feet in the air. It misses the car in the lane next to me, and all i can do is watch this thing propel towards me like a helicopter... I brace... I wonder if the bar examiners would waive the fee for February's bar exam if I can't make it there this week... the brick of wood hits the front of my car... the horizontal propelling spins it to the right side (versus vertical propelling which would have popped it up into my windshield... i can visualize stuff like that as long as you don't ask me to do the math)... I get to my destination and survey the damage. Headlight crushed in along with a few inches of my hood. Didn't get to drive my car to the Bar... frustrating. Damage estimate: $1,200, thank god for auto insurance. It should be pointed out at this point that I'm not used to auto accidents. I've been driving for 11 years now without much issues. Since January, I've had a rock kick up shattering my windshield, been rear ended (last month), and now this. It wore on my nerves to say the least.
The route to Roanoke involves going up and over the middle of the state. No joke, here is the map...
View Larger Map
No matter what you believe... this blows all common sense.
I stayed at the worlds most sketchy Ramada. In my experience, Ramada's are usually nice. Apparently I was wrong. I'm cool w/ sketchy places to sleep. I'm a backpacker; its what I do. I saved over $100 staying here. That should have been my first clue. Little things, like the outdoor pool, the lack of promised fitness center and spa, no restaurant... outdoor rooms... the blow dryer that didn't work, after a while they do get to you. But no biggie, shrugged it off.
The itching began around 1 on Tuesday. I was sitting in my car during lunch. I had just completed the first quarter of the bar exam. It was my right hand. Itch. Itch. Itch. It looked more like a flat welt than a bug bite. Oh well, I thought. I've been having worse reactions to bug bites in the last couple years or so. The itching continued during the second session of the exam. Oh, I'm in a full suit by the way; its a requirement. The underside of my chin started itching. I'm trying to write essays, w/ my hand and neck just itching uncontrollably. Day 1 ends. Go back to sketchmada.
At one point I went to get ice. I step outside; I'm in my pajamas (high school powderpuff t-shirt and yoga pants... hot). Its the kind of hotel where the doors are outside. I'm holding the ice bucket. Its outside of town. There are mountains... but all you can see is the faint red blinking lights at the top. I'm a big wuss... decided this was far too much like a horror movie for comfort... not to mention its a hotel full of lawyers. RUN back to my room. Ice is never gotten.
3 more welts show up that night.
In the morning, there is another on my face.
During the exam, I watch my hand grow. It was like the reaction to the MRI dye. First thing to go was the bones in my hand. During lunch, I checked out the other welts. They all had centers w/ rims. My only other experience w/ that was last year when I had an allergic reaction to a bee sting. I watched my hand through the second half of my exam wondering if I should actually be in an emergency room. Where is the line? At what point do you give up on the most important exam you will ever take because damn... that just ain't supposed to happen to your hand. At this point I was thinking a good deal about Kairol's post about working when you are sick. My right eye, the one I had surgery one, started watering again... now of all times. My nightmare about not really remembering the last half of the MBE (multi-state Bar exam)... sort of came true... I was definitely more focused/worried about what was going on w/ my hand. But I was stoic.
I came back to sketch-mada, talked to a few people. Made jokes about how it took the pressure off. Gave me something else to focus on. Claimed I looked like I had one of the Egyptian plagues, boils to be exact. This would not be as funny the next days.
(This story does have a point, I swear)
Next morning. Lots more welts, though they seemed much more bug bite like and less welty... at least at that point. Hand... well... I couldn't see two of my knuckles. Doctor appointment scheduled. Just needed to get back to Va Beach by 4:15.
I detoured. Hell if i was going to be all the in po-dunk no where w/ out seeing a few things. My hand be damned. I stopped off at one of the 7 natural wonders of the modern world; the Virginia land bridge. It was pretty awesome, but rediculously expensive. I took the $18 I paid to see a giant bridege of rock, and went ahead and wandered the whole nature trail checking out a few caves, a mock indian village and some waterfalls. Of course it was a miserably grey and humid day and on the verge of rain. To give you an idea of how imulsive I am about these kinds of things, here's how i'm dressed: kahkis, black clingy/shiny tank top, flippy-floppies, key's wallet just hanging from my pocket, as I had no purse, and my big new camara, which I swore if it started raining I would strip off my shirt to wrap it in to save it. Once I accepted that I didn't think it would be the end of the world if i didn't make it home for my doctor appointment, this became the most fun party of my trip. I loved the spontenaity and the peacefulness of it. I loved that there was a was cowboy riding a raptor. That alone made the detour well worthwhile. I'll add in pictures once I get around to loading and editing.
I made it to the doctor's office with minutes to spare. I feel that nothing is as awkward as even the nurses staring at you because of the welts on your arms face and chest. I got led back, and was waiting for the doctor, and there was just this collapse. And i just started balling my eyes out. There was nothing I could do to stop. I had just sat for the most important test of my life and distinctly felt like I failed, and thne watched as my hand near doubled in size, and that wasn't right, and now medical professionals where just staring at me. It was like everything that has happened in the past months just crumbled down. I had no reason to hold it together anymore.
Its amazing how we do this. Cancer patients in particular. Everyone asks how we can be so strong. How we can still live our lives when everything is going horribly wrong. How we keep it together. And I believe its because we have no choice. Not one of us believes that cancer is the end of our lives, or at minumum we cling to the hope that it isn't. We don't want things on hold. I want to get through what needs to be done so I can pick up the pieces later and move on. My mom said when I got home if the swelling had happened two days earlier, that would have been it... the last straw for me and the exam. I'm not so sure. I still don't feel great about how I did on the test, but I did it.
I tried to say tell the doctor that I thought it was an allergic reaction to a spider bite... or maybe bed bugs... though there weren't any tracts. They didn't agree. Another doctor called in. Its weird because its all over my main exposed areas, and no where else. It isn't hives b/c they have little heads. "I would say that it was shingles, but it is on both sides of your body." I think that was my favorite line. I know what shingles is. I don't want shingles. It might be any number of different types of rashes. They broke out a book and started comparing pictures. Nothing I had looked that bad, they said maybe it's mild, or early. There was an awkward question of whether I have herpes b/c a similar rash could follow an outbreak... uh, no. And then it was decided to just put me on steroids to bring down the swelling and stop the spread. Narcotics to stop the pain. I go in Monday to see if once the swelling is gone they can tell a little bit better what they are dealing with.
In the meantime, I'm to pay attention to if my fever goes up (I had just a low grade fever). If i feel things in my mouth. If the welts turn to boils and fill with pus. I should expect the swelling in my hand to get better before worse.
This is supposed to be the weekend I drink myself senseless and just not move and relax for the first time in months. Fuck.
More welts yesterday. On my toes, and 2 on my tummy. Great. New regions. I found a bug on my bed, here, at home, crawling in front of me. Grabbed and squeazed; it exploded w/ blood. Fantastic.
The fever went up, but down again, depending of if i'm upright. Steriods make me sort of jittery, the narcotic is non-codine based... so for the first time I'm not sick as a dog on pain meds.
I have an odd reaction to bugs. I'm not afraid of bugs... except milipedes, those things are terrifying and fast. I know i'm allergic to certain things, like spiders, but I live by a don't hurt them and they eat everything else mentality. At the same time, when you get to that place where you aren't exactly awake, and you aren't exactly asleep, the things that i see there are bugs. Spiders, beatles, mites. When I feel particularly guilty about things, I see fruit flies flying around me. When I was in SE asia, and on the malaria pill, methloquin, I hallucinated about bugs. And then w/ a 105 degree fever... bugs. So, when I'm all together I'm fine. When i'm borderline paranoid, I'm edgy about bugs. And its driving me insane now as I'm paying attention to ever little thing that brush my leg. I just want to fill a bathtub, grab my snorkle and just sit underwater for like an hour in case there is anything thinking it can live somewhere on me.
I woke up today to 3 more welts.
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