Identity Crisis

Who am I if I'm not a cancer patient? But nor am I really a cancer survivor. I am not officially a lawyer, nor am I a law student... or a student in general... and i've been one of those since I was 3/4ish... I seem to be missing all the things that tend to define me as a person. I remember when i was a volleyball player, and athlete, a nerd. Labels were easy in high school.

But now I sit here at 26 in place that I have identified as limbo. A state of flux, where I lack any definition. 6 months ago when I had a million things to write about thyca, I was a cancer patient. I had definition. Even if it involved the "wait and watch" approach to treatment. At that point someone was watching. Now, 6 months late... I can't tell you the last time I went to a doctor for thyca. I know, I know... stupid on my part... but I scheduled an appointment for a doctor down here, and the next appointment available is in February... I scheduled this some time in october. So no one has been watching me, checking me, keeping it fresh in my mind that i have cancer.

I know most of you out there may think... wow... what a blessing not having cancer thrown in your face every other month. But what if that's something you're used to, something you've been dealing with for 5 years. I've made major life decisions based on this stuff. It has shaped who I am. There is no denying that. Even just shifting to "wait and watch" was a bit of a blow to the identity ego. When people ask if your in remission... I think I just grumble a bit. No, I'm not a survivor... not really... limbo.

My family, as per usual, don't get it. They don't seem to grasp that I am a special case. That I have special needs... HAHAHA I'm an SNC. Upon leaving my doctor, I asked him if he knew anyone in my area that does thyroid cancer. His response was that he wanted me treated in DC and gave me 2 names... the other option was to be treated at a medical research facility. Anyone who is up to date on how you treat a case like mine... w/ lots of recurrence, lots of radiation, lots of tests, lots to look for, and all very small. His fear, that a local yocal is going to look at my tests and determine i need to be fried by another round of radiation; that they can't accept the "watch and wait" approach. A part of me agrees w/ the not waiting... the paranoid part, the rest of me though... agrees w/ my doc. I've read the science... I'm pretty good at understanding things... I'm probably immune to the radiation at this point... and i've had a hell of a lot of it.

By now i was hoping to be living in DC. Hasn't happened... so, on pressure from the 'rents, I've made an appointment w/ a local yocal... the only doctor in the area that does thyroid cancer from what i can tell. And by area I mean the 7 cities. I can't even shop for a doc here. And again, I have to wait to February just to meet the guy.

So I talked to my parents about using the doc up in dc. Mom's response, "well what if they find something; I can't take off work nor afford to go up there and stay in a hotel. I know you want the best, but that isn't really practical."... Wow... my response, "i would have no problems using a local guy if all he was doing was checking my bloodwork... if there were nothing there"... mom, "but your fine"... "no mom, i have something in my neck" ... "have you felt something, are you worried about it, or are you just being paranoid"... "No, we already know that I have something in my neck, I told you this months ago... you cried, i lit up an mri, bloodwork was all positive, i need more than basic tests".... oh... proceeded to tell my dad how i felt. He agreed with me. Till he talked to my mom. The conclusion relayed back to me was, "we can always change to a different doctor if something shows up." Apparently it completely is going over their heads that something has shown up, almost a year ago... soooo annoying.

So basically, they're saying they can't afford to take care of me in dc if something is wrong, and I'm saying that something is already not quite right and if it gets worse i sure as hell don't want someone down here poking and radiating me. And they have no idea that still have stuff going on... its like b/c i moved I'm done and in the clear.

So I guess that's more of a case of mistaken identity.

Any which way I look at it, its all a part of a larger identity crisis. I don't really know who I am or what I'm supposed to be doing anymore. I don't want to wrap my world around cancer, its even why i backed off from the blog... but I don't know what else there is for me; especially if in a few months i have to go back to being the cancer patient. There's no way to move on like this.

The War on Advocacy

So I've read this article floating around today about the bad impacts of advocacy and awareness efforts of such things as "Check Your Neck". If you haven't read it, you can find it here.

And its made me angry. No... not just a little angry, but quite frankly it pisses me off, and if it pisses me off just about how it handles thyca, then I can't imagine how other people trying to spread awareness for other cancers must feel, but am guessing its similar. Specifically the notion that thyca isn't that deadly and checking doesn't change prognosis pisses me off. This is EXACTLY what is wrong with doctors and their total distance from patients. I know that thyca isn't a super killer. But SERIOUSLY, you aren't just checking your neck to make sure you don't die; its a matter of quality of life!

To catch thyca before it gets in your lymphnodes, your parathyroid. Before it gets that chance to get into your bones or your lungs. To catch it before its side effects have a detrimental effect on your weight, on your brain, on your emotional well being.

It's not just about reducing the death rate!

Its to prevent an experience like mine. Where it seemed so obvious to my ob/gyn that I had an enlarged thyroid that she almost didn't say anything to me. Promoting checking your neck saves from that embarrassing moment when the doctor says, "You know you have an enlarged thyroid, right?" I mean really? How many of us even knew exactly what a thyroid was? And THAT is a problem. THAT is why we need a check your neck campaign.

Maybe if I knew, then it wouldn't have spread. Maybe if I knew, then they would have been able to take it all out when they grabbed my thyroid, and I wouldn't have to be constantly monitored to see if it pops up again. I wouldn't of had to have a neck dissection, over 500 mCi of I-131. A little bit earlier detection may have saved me some weight gain, and the emotional bits that go along with that.

And maybe if I had known anything about thyca, it wouldn't have been so scary! Cancer awareness, advocacy, promotion... actually make that awareness for any disease, suddenly makes it something you can control. If you find something suspicious... suddenly the ball is in your court. You've been told what to do. You know how to handle it. Breast cancer is the best example of this I think. I feel like, if i found a lump, I would know off the bat what to do. And I would feel confident that I caught it early, and it would save my life. Breast cancer has done a fantastic job about getting knowledge out there.

So I guess to be fair, I do need to ask myself if maybe the past few years have resulted in some trigger happy reactions when finding new nodules. The article suggests that detection leads to finding tumors that we could just live with and puts us at risk for other issues. Would you really want to take that risk? I mean, I hate hate hate hate hate biopsies... and it has taken me a long time to accept that i can just have tumors floating around in my neck and I'll be ok. This is a hard one. Maybe I would be a shinier happier person if i didn't know? Ignorance is bliss...

Hmph... I'm afraid I've talked myself into a mental conflict. How nice it would be to wander around knowlegeless... you know, until i just kiel over one day b/c my unknown cancer spread a little too far. The regret you would feel in learning that you may be dying from somethin you could have prevented?

Are we wasting money on unneeded tests? This is ironic b/c i'm working an an arch of posts about how closely our doctors should be monitoring us, what kinds of tests they should be running, and if they would improve our quality of life. I think for me, I would rather have control over my life, have the quality effected by tests, rather than disease.

I think the key issue now is that we don't have the ability and knowledge to determine the difference between what needs to be monitored, operated on, treated, or just left alone. If we had that knowledge, then this whole article would be moot. Isn't it better to start getting the knowlege, and the habits of checking out there now? Doesn't more detection contribute to studyies and understanding how and when to treat?

Then finally it comes down to, even with thyroid cancer, to that one person, who saw the advocacy campaign, checked their neck/breast/prostate/est, found something and got it tested, and it saved their life. 1,600 people die from thyroid cancer each year. If even just one of those people could be saved each year, doesn't that make it worth it?

Giving Young Adult Cancer the Bird

In case you haven't picked it up already, I'm not really a big fan of cancer, and don't really have any problem with being angry at it, or being disgruntled, or being a smart ass when it comes to dealing with it. Its like all the rebelling I didn't do as a teenager was really just waiting for the opportunity to rage against the cancer machine, or something like that. (Okay, if you met me, you'd probably find me to be one of the most passive and mellow people ever, unless I'm writing... I'm even really quiet and sort of shy). But all that is besides the point; i[2]y has just came out with a new a new campaign that's all about giving young adult cancer the bird.

Basically, they are selling traditional advocacy wristbands at Spencers, and on facebook they are trying to get 10,000,000 million strong to give young adult cancer the bird. They are also collecting pictures of people giving cancer the bird.

This kind of leads into a look into two seized upon methods of advocacy that are pretty popular: facebook pages and wrist bands.

Now, a lot of people are like oh whats the point. I mean, yeah the bracelets do make some money; but really whats the purpose of the group, not like they are out doing a cancer walk or anything like that, right? But it is like that. Even if people just sign up to have their name on something. Even if you don't go out and buy a bracelet. I like it b/c well... I'm angry about having cancer. I'm not a super rebel, but its kind of fun, kind of relieving to be able to just publically announce how you feel. I also think that its something that's just extreme enough in title, that people will click and read what the group is about.

70,000 15-39 year olds. 30 years w/out a change in cancer rate. Yeah, we have damn good reason to be pissed off.

So do names on a list, just general members of a group make a difference? I think it depends. It makes a difference to me when I see the group, I bet I can find 1,000,000 people who hate cancer, and it has 1,160,649 members... I mean how cool is that... And it prompts conversation and networking. Whatever the effect, I don't think its hurting things.

As for bracelets... I'll be the first to say that I think wrist bands are getting a little out of hand... but I will also say, that as someone with specific interests in certain limited causes, I love having a bracelet, and having people ask me about it, and doing a little more educating. So it's a double edged sword there. I also find that few things are more attractive than when you see a guy sporting his little yellow livestrong bracelet. I don't know. I find it hot. It makes me want to actually talk to that person.


I kind of like this. I think each week I'll try to write about some sort of cancer advocacy or awareness thing that is going on. Let me know if you have any suggestions of things going on. And pass this on!!

On a random side note, I'm doing a lot better today, was even able to actually drive. I like seeing straight and getting my brain to function.

Post-Interview debriefing

I wasn't going to post again, but I had to.

The interview was fantastic, really,... and all I want to do is go home, curl up in a ball, and cry.

How f*kd up is that?

There was a panel of 8 people. It was kind of like a Chinese fire drill meets Monty Python's Spanish inquisition. They questioned my travels, why I was interested in defense work, etc. Poked fun at me for knowing the cops in the city. Sold me on how awesome working there would be, and how great of an experience it is. Then as I left the berated me with information and tips for passing the Bar. I don't remember the last time I slipped so easily into stride w/ a group of people. But they are basically all my friends transposed into new bodies. People interested in public interest work aren't your usual lawyers. They were all in late 20's early 30's (more or less). I was comfortable, and could see being happy, though poor, there.

So, why am I sitting in a library choking back the urge to cry?

First thought, what if I don't get the job? That would suck. I almost didn't want to like the interview so that if I didn't get the job I wouldn't be disappointed.

Second thought, if I got it, would I be settling? Its a safe job. Near home, could commute if I really wanted to save some cash. Its a very relaxed job (sort of)... would I get too comfortable doing something that comes easy to me? Is the safe job the way to go? Safe, reasonable, prudent, practical... always the way I deal with things.

Am I giving up on an international job search? Is practicality winning out?

What is it that I even want anymore? When did I stop aiming for my dreams, and instead started looking for things that were safe and practical?

I don't know.

a few things

1. I thought about last night's rant... and I think whats bothering me the most about my mom is that she's supposed to be the person that is there being the most supportive and understanding, and she isn't, and I don't have anyone else right now, especially b/c I moved away from my support network.

2. I finally got the call about the marble sized lump in my neck. Apparently its just a normal lymph node... which is finally decreasing in size... so YAY to that.

3. I found this comic. Its awful how much I love cancer comics. Especially really offensive ones... they make non-cancer people squirm... and i just find them amusing... this one, isn't so much bad, as it is how a lot of us feel when we're waiting for surgery or whaterver...


Cyanide & Happiness @ Explosm.net

Mine

This is a rant... you can read if you want, but its mainly stuff i just needed to get off my chest, and is only the tip of an ice burg on a collision course.

I've recently moved home, and have been dealing with a whole whirlwind of issues that come along with being home, generally revolving around my mother. I love my mom, but she's a little much to handle, and there are things she just doesn't get.

For my birthday, my step dad is getting me a personal trainer. I think this is fantastic and couldn't come at a better time when i need the esteem boost and a fairly set rigorous schedule. He's been working with one since January, entered a weight loss competition, and dropped 61 lbs. So, I'm jumping on board. He gave me a bit to read about the science behind weight loss, etc... but the very first page talks about ways to stimulate t3 and t4 production, and how important thyroid hormone is to weight loss. This is possibly the worst thing to start off with when you are missing a thyroid and you take a set pill of t3 and t4, and no one has been able to explain how you raise your metabolism w/ out thyroid hormone... I'm a humanities major, not a biology major... I've tried asking my endo, but the just tell me about general exercise and cutting portions... sorry, i'm getting a bit side tracked... But I brought this fact up at dinner, mainly b/c a lot of my step dad's routine is based around boosting thyroid hormone production. He tells me that he talked with the trainer he's hooking me up with and she's worked w/ thyroid cancer patients before and they'd design a program for me. Mom on the other hand, responded by saying I couldn't blame all my weight gain on thyroid cancer because she knew someone else without a thyroid, who just learned how to eat right, and then became a nutritionist and she maintains her weight.

She has a lot to say about what I shouldn't be blaming on being sick. I've considered printing all the material on thyroid cancer, treatment, and side effects, particularly from chat rooms, blogs, and forums to have her sit and read, and let it soak in that in reality, i don't publicize (ok i publicize, obviously, hence the blog)I don't publicize with my everyday people every thing, some big, some small, that has really gone on, and what I tend to work with on my own.

Whats sparked me on this post is seemingly pretty petty, and not entirely cancer related, but it has to do with how she treats things that are mine. She has this giant stain glass work table thing, which she decided, to put under my bed... on top of my undergrad diploma... and the $300+ diploma frame that I won in a raffle, during my very first week of hypo hell. The whole thing is totally scratched and damaged now (if you know how to fix scratches in polished wood, let me know). Its probably one of the nicest things I will ever own. And she was all, "there was nothing under your bed... "etc. She didn't apologize, or say, well lets see if it can be fixed, or anything. And when I was moving, I went to pick up the U-haul, i had all the awards, pictures, and other odds and ends that i had had on my fridge in a pile, to be put in side a book, or something to keep them flat... she just took a trash bag, and threw everything in it... wine racks, rugs, shot glasses... and i'm like... wow, glad to see you even give the slightest about my things. And that's how all my stuff has been treated the past few years.

Oh, and she doesn't approve of what I do and don't keep. Now I've always been a pack rat to a certain extent. I actually think i've gotten better over the years, but there are still things I keep. Especially now... when I feel like I forget far more than I remember... I feel like having something there as a reminder helps keep memories in tact. Does anyone else out there find that after being sick, you place ridiculous sentimental value on the most random things?

I've been playing the grin and bare it game. Nothing new for me... I've never fought back or stood up for myself. Ironic for someone who's about to be a lawyer. If I tell her my opinions, or stand up for myself, she cries. She's bossy and needy, and tends to only see how things affect her. If I'm sick, its all about how she reacts and how she gets sick worrying about me being sick (this is everything from the sniffles to cancer). It really becomes about how stressful things are on her. I think i've mentioned before, that i've always been the hand holder of the family. How I tend to shy away from getting the attention from being sick. I generally don't like the hugging, and the "i'm sorries"... I think i've also mentioned that i've lost a lot my compassion for other people's problems. So to be home, and having mom push and exaggerate every ailment (she's only 47), ache, and problem in her life, to wander around the house for a day talking about how she's "mentally depressed"... for one day... Especially when a lot of the things wrong w/ her, she does to herself, or she can make better using basic common sense... I've solved her problems like 50 times recently, and both my dad and step-dad have turned to me, and said "you know you are just talking to a wall, you can't talk common-sense to her." And so it boils down to me telling her to suck it up; i can't respect someone and handle being bullied/and/or treated like a teenager by someone so utterly childish.

Again, sorry for the rant... i just needed to clear my head... mainly so i can continue keeping my cool.

Turning Zombie

To begin, let me say I have an unhealthy obsession w/ zombies... like we all should... zombies are fun.



So they did the biopsy on my neck. 5 passes. Used a topical anesthetic... which did absolutely nothing. The doc also used a laptop for the ultrasound that was playing the lord of the rings soundtrack. Had me watching the screen the whole time too... If you are a doctor, always ask to see if your patient is cool with watching you jab a needle into their neck... The answer isn't always yes. Anywho, he was disturbed by how calm i was the whole time. I kept thinking about how big of a bruise I was going to have to be sporting at graduation. (bruise wasn't too bad, hair covered it... but the muscle was so sore i couldn't turn my neck).

So he looked at the slides , and to my relief... no cancer. (though he is sending the slides in to see if anything grows). He said it really looked weird, like I had necromancing tissue. Thats right, necromancing tissue... I am a necromancer. A zombie. A part of the living dead. (necromancing tissue = dead tissue... hence zombie).

On a venting note, i didn't tell my parents what happened this week. Why I hadn't really gotten to packing. And I got bitched at a lot for not doing it..but still held my tongue. They really only need to know if something is wrong.

B/c things never go quite as planned...

After taking about 20 pictures of the one new lymph node, the radiologist sent me home. I think its b/c it was after 5 and they wanted to go home... only to tell my doctor that this new node appeared to be cancer, so now i go get it biopsed tomorrow morning. My conclusion: ALWAYS make sure your doctor asks for both an ultrasound and FNA (fine needle aspiration aka a biopsy).

I graduate from law school in 2 days. I move in 4. My goal was to leave all of this behind. People keep asking why I'm leaving. At this point for as much as i love this place, I hate... I hate being here. I hate the memories attached. I hate that all the bad things have tainted the good things. I can't live with this anymore...

Eric was the person who was there again... just minutes after bad news hit. He new when he walked in something was wrong. Sigh. And I can't tell my parents. My dad comes in tonight... I can't do it. Not this weekend. Not until I at least get the biops result.

How much have you wanted to make things about you?

First, let me apologize to people w/ questions, that i haven't gotten back to immediately. I just, this morning, finished my last ever law school exam. My brain is totally fried. And really, emotionally, I am completely spent.

I needed a hug tonight, but couldn't ask for it. It wasn't for being done w/ law school... though, in a lot of ways i've been in shock about that. The hug need ties back with Wednesday. I finally got to my doctor. It was just a check-up, and tune-up, before i move. But it also meant me saying... "there's something behind my ear... its pressing on a pressure point"... which in reality is driving me damn near insane... I mean, it is in between where the jaw connects just under the ear... that fucking hurts if you stick a marble sized lump there.

My doctor's reaction, after feeling my neck once, and not noticing it, was, "wow, yeah, there is a lymph node there."... Before I say anything... I want to say that I love my newest doctor. He is straight forward with me, and tells me directly what he thinks is going on. From a smart person standpoint this is awesome. From someone who just wants to be told everything is ok... I kinda want to throw large solid objects at him.

So being told that yes my cancer markers are positive, and something small but not big showed up on both the ultrasound and MRI, and that i need to wait... well the desire to throw something at him really comes through.

But then there is the new lump. And he acknowledged its presence. He expressed how he didn't think it was thyroid cancer b/c of its location. Right side, under ear. My cancer has always been on the left. No TC ever goes under the ear. I'm not sure to be happy about this, or cursing it. It could be something different... not just thyroid cancer... something new. It is in fact terrifying.

I had a nightmare the other night about getting chemo. I felt the needle in my arm near my right elbow. And i felt the pain and numbness as the chemicals seeped into my system. Imagination is a dangerous thing.

There are people out there, who may never read this, that I need to thank. Michael for listening to my crazy rants about dreams and whats happened. Heather, for always being there if I really need her. And Eric... I feel like I have to type this, b/c you might not ever know it in person. You were the first and only to know that things went bad recently. You didn't feel a need to hug me... and just told me it sucked... and that, that is what i needed. I needed tonight... out w/ people I know, but not really. It's easier to pretend everything is close to normal, and this year is really just an end to law school, and not everything else. I will probably never tell you all that happened this year, and how much being friends with you has been a way to vent, and to passive aggressively take out my feelings on the world. Thank you... you may not realize you've done anything at all, and I can't quite seem to pinpoint in words how it is you were there, but you were... thanks.

Something I wrote back in 2007 that I randomly found on my hardrive

So I found the below ranting on my hard drive... amazing how the same feelings keep popping up again and again over the years.



Sometimes things just suck more than anyone can possibly begin to imagine. I ask you if you know what it is like to have every inch of your body and soul ache as if at any moment it will just give out from the wear and tear. When emotions and experience hurt physically. Not so much depression as a realization that too many things are wrong to be righted. That there is so much you can’t change you no longer have control over your life. And the more you try to control the larger the hole you fall into. When so many things have gone astray that your goals seemed blurred. Where you long for the opportunity to be torn between an ambitious career and life with a happy family because now both options have been torn from you in the most callous of manners. How you wish for a second in time there would be someone that could honestly tell you that it would be ok. Someone to sincerely hold you, someone who actually cares beyond just a friend. It’s the point you get to when you wonder if life would be better if you had just lived it the way you wanted to… pursued your dreams… pushing it to its fullest extent and then dying young, or if fighting for life, subjecting yourself to millions of tests, days of worry, never being able to truly be free to do what you want again, yet living a “full” life into old age…. But really, what kind of quality of life is that??? I don’t know what the point of what I’m trying to do means anymore, especially if I can’t pursue that life. I’ve lost my best friend b/c I dared to go to a level more than friendship… now he won’t talk to me. He was the only thing that really kept giving me hope for something more. And now I’m more alone than I have ever been. I have no dreams that can be achieved. I have no hopes. I have no motivation. I’m just waiting around… waiting for the next blood test to come back, the next scan to be performed, the next phone call confirming the next appointment, the next interview that will never come and a real world that can only shun someone such as myself. And I don’t know how to make any of it better besides more waiting and watching as the world passes me by.

hahahahahahaahaha

Laughter... thats about where I'm at right now.... sickly twisted, demented laughter.

This post was going to be about how last night i finally cried. Not a good hard cry... but i cried all the same... and all due to the fact that i looked down at my left forearm and there was a bruise that stretches three inches long and is about an inch wide... and it just maid me wail.

But then there was today. Now my right arm/wrist started hurting midday yesterday... I thought maybe i pulled something or whatever. then it started to swell. then today, from the injection site on the back of my right hand, and running all the way to my elbow, you can see a nice red line where my vein is. I just spent the past 3 hours sitting in an ER. My arm is HUGE. you can't even see the knuckles or bones in my hand move. and it hurts like a bitch. I'm on a lot of advil. Apparently, some meds cause this reaction. Superficial Phlebitis, "Phlebitis is the name for inflammation of a vein. This results in local redness, swelling, warmth and pain. This may occur after medicine has been given by vein as a result of the irritating effect of the medicine." Of course this took a day to affect me... 2 to actually get me to the ER.

It just sucks. There's no eloquence about it. No touching poems. No long descriptive words. This is, I needed to study to take the MPRE on Saturday (ethics portion of the bar exam), and the number one leading guy in my field of research did a lecture today, and instead of doing either of these things, I was stuck in an ER... a crappy ER where they had me thrown amongst wheel chairs, they didn't even bother to get me a room or bed, next to some guy with a nasty case of the flu. It throbs to type... you know... b/c i've got a giant mellon for a hand.

I'm sooooooooo tired of always having to just deal with things. Its bull shit. People always think your soooo strong. Also bull shit... you deal with it b/c there is no other option. So as usual, i'm immediately back in the library. Studying. Missed one of those great life opportunities to meet someone I want to be when i grow up... but hey, what would i of had to say anyways, right?

I need a lot that i'm just not getting right now... I just have to keep pushing for a few more days, then maybe I can just collapse for a while.

Human pin cushion

As per usual... I'm waiting and I'm scarred. It's my favorite week of February. The week where i get poked and prodded, and find out if I'm still cancer free. I've decided that needles fuck with me. I don't really mind them so much, I'm fine with the physical part of being poked. But what sucks is that I'm not so great about thinking about it. It started Friday; blood work for a pregnancy test. Couldn't just pee on a stick, no, for the testing I'm doing they actually needed a serum... Tomorrow is the first injection of thyrogen, followed by a second one on Tuesday, then blood work on wed. and more blood work on Friday followed by an ultrasound and potential biopsy, and then i see my doctor on Monday for the results... Human Pin Cushion.

Thyrogen... side effects: nausea, headaches, etc... basically, even if I handled this stuff half as well as i did in the beginning, the side effects alone would mean I'm not going to be a shiny happy person. It's also one of those things you can't take when your preggers... hence the blood work pregnancy test, nor do you wanna get knocked up within 6 months afterwords... not that I would, but I dislike having my options taken away

I hate ultrasounds... its my least favorite part about being sick. I would rather just be cut open or radiated... its irrational, but its the truth.

I'm tired. And I'm tired of having to deal with this stuff. It wears on you. Tares you down bit by bit. I don't have hope... I don't hope that things will go well this time... its too crushing when it doesn't... I just wait... start planning... be prepared for the worst... have the back up plan. Its harder this year. I'm about to graduate school... I'm supposed to be making plans and back up plans for my regular life... having to create back up plans in case I'm sick... ha... sigh...

Back to being tired... I realize I'm doing a lot... I do a lot so i don't have enough time to sit and think too much... I rationalized if I'm too busy to deal with being sick, clearly I can't get sick... I discovered this time last year that was not how the real world actually likes to work.

But being tired started over break. I thought maybe it was just that i needed the rest. But I'm still sleeping... if I don't make myself get up, I sleep for at least 12 hours... all the time. I go to bed earlier than i ever have... EVER. and i keep gaining weight. They kept dropping my meds... I'm afraid they've dropped too low. I'm going to ask if they will put me on a T3, T4 regiment. I hear that using both helps with things like mood. Doctors tend to only treat what they see is necessary and skip what makes the brain happy... a hippie hypnotist told me this. Yes, I went to see a Hypnotist... He hit more nerves than your normal head shrink does in the first 5 minutes of talking.... and that was before he tried to hypnotize me... it was just something to try. But so I started reading up, and decided I really haven't felt normal in 4 years.

oh yeah... that's the other head fuck. Next Monday is 4 years. 4 years since i got a phone call congratulating me about getting in the the University of Richmond School of law... the first law school i got into... followed by 3 hours later getting a call telling me the biopsy had come back "suspicious"... It was he first realization i had cancer. So no pressure this week at all. I'm not worried to the point of being unfocused. I'm not panicking. Irrationally planning. Or snapping at people b/c they can't quite deal with their personal problems at all. *sarcasm* Oh yeah, I don't deal well with compassion anymore. People and their personal problems should just shove it if they made other commitments. People who use their shit as excuses, can kiss my ass if they really think they're going to get compassion out of me, or level their workload on me to pick up their slack. We all have issues. You get as much slack as I would expect, and part of growing up is knowing when you are more of a problem than a help in a project or to a team, and sucking it up and pulling out if you can't juggle accordingly.

Sigh... I was so much stronger than this 4 years ago. I wish nothing phased me... the way it did then.... now i border between numb and more tightly wound than anyone on the planet.

Bad Hair Day

Two weeks ago some fabulous bastard in Russia somehow or another managed to use an ATM to take all my money in my bank account. Since then I've realized I'm a bit on the poor side right now... and certain things, I just can't afford anymore and I need to figure out what I can live without... This leads to the question of whether I can live without my hair.

Its not that drastic of a leap. It starts off that i have naturally super curly hair, afro curly hair. Its so big, and fluffy and well just looks weird on me. So, last summer I got it straightened... permanently... well not entirely permanent... as I have to redo it every so often... and in here lies the rub... in the US, this costs a little over $400... poor people do not do well with things that cost over $400... so then you need to start looking for alternatives... in my case i can cut it all off, start over, regrow it curly starting short, donate my hair to cancer kids. Or i can perm it, and hope it doesn't look weird as the curl comes in. And so i sit and i pull my fingers through my hair, something i could never do curly.

Then with each stroke, and ruffle there's another reminder of why neither of these might really be an option. Its falling out. A lot of it is falling out. It has been since the last round of radiation, but its gotten a lot worse in the last month. We aren't talking a few strands... we're talking i have to unclog my tub after every single shower. I comb my hair and a handful of *wet* hair comes out... a handful of wet hair is a lot of hair. So then as I sat on the couch and hair just falls around me. I can't get it to stop. i just ran my hand through one more time, casually, 4 strand come out. i have a lot of hair, its not like I'm going bald... but i can see where its getting thinner... and I can't help but wonder how long it can keep falling out. straight or curly, long or short... I'm known for my hair... its sort of my identity. If this stupid cancer takes it away from me... its a change i don't have control over, its a change in my identity that i don't control. Metaphor for my life? Quite possibly.

So what causes the hair to fall out? the side effects of radioactive iodine are worse 2-3 months after dosing. Its been 4 months. Hypothyroidism makes hair fall out. So that would imply that my meds are off. Which is what i think... and almost hope for. It would explain the tiredness, the depression, the mental slowdown, the writers block, the inability to focus and read, to get the thoughts from my brain to my mouth, the weight gain etc. etc. etc.

And other alternatives... the other what ifs... i'm still waiting... waiting for my blood work to come in, waiting for the news of the cancer still being there. Then what, electronic beam therapy? Chemo? Well doesn't that just leave my hair shit out of luck, eh?

Its my one true vanity. Maybe in that sense it needs to be taken away from me. Truly humble me. Right... b/c I wasn't ready to give up all my material aspirations to go join the peace corps for life 4 years ago... oh wait, no, that's right, it was Americorps first... I was clearly so self centered in my need to devote myself to helping others that taking away everything in a few steps is exactly the best way to crush that sort of spirit. Sorry. I'm teetering into another topic plaguing my brain. Guess for now I'll just watch my hair fall out and sit and wait just that much longer for whatever it is that's coming next.

2 long hours...

"Your case is... interesting." This is the last thing you really want to hear a doctor say to you... ever. But especially not when "you're case" involves 4 years of battling a type of cancer that is supposedly the "best" cancer to have, and the "easiest" to treat. I could really just create a blog dedicated solely to the idiotic things doctors tend to say. I'm almost half sure since I came around they've been forced to change their words just because I've proved to be an exception to almost every rule. But I get ahead of myself here.

It's also not an especially good phrase to say when the patient has been sitting around waiting for over two hours. When the intern comes in and also starts off by saying, "I've been reading through your file..." looks down at the 3 inch folder in front of him then turns to scroll through the computer version, "... it's really complicated,"... stops, winces, he knows that's the wrong thing to say... "its interesting." I hold my tongue from retorting something along the lines of, "well I think its pretty interesting that you are like a 6'7" Asian kid. Lets get sticks and poke each other out of fascination." I've had a bitter week and this is really the last place I want to be.

It does not help that I've been tired... yes I've been tired since May, I think. I also can't breathe, my eye tears up like its the only part of my body willing to outwardly portray how I feel more or less all the time. I'm only here for a check up; to meet my new doctor; to get my blood work done, just like i do every few months... is it 6 or 3 now? I'm never sure. I show up when I can be squeezed in. The doctor I've been seeing for years was offered a better position in San Francisco; I hope in a year to follow her. The nurse who takes care of me, has also changed locations, though just down the road... her missing presence is almost crushing to a person who strives on a certain level of continuity.

Two hours here. Its an endocrine clinic. Emphasizing diabetes and how to take care of that... only a few pamphlets for the thyroid cancer patients. And lets face it... by this point, all I can do is sort of scoff at such things.

This new doctor looks pretty young for how highly recommended he is. There lies double meaning with almost everything he says. "You're case is... interesting." This phrase encompasses about a bagillion meanings. "We have no idea whats wrong," "you defy reason," "we haven't been going about this the right way," "I could write something about you." I'm not surprised... it wouldn't be the first time since this all started that a doctor found me "interesting"... or asked to use me in a lecture... or decided to try something new out on me.

The next double meaning phrase. "We don't every want to do radiation on you again." Music to a bitter angry cancer patient's ears. "We don't think its worth the risk to keep doing something that hasn't worked." Then comes logic and reason rushing down like a thousand raging waves. They haven't even taken my blood and he's already telling me that he doesn't believe the last round of 222 milicuries of radiation has had any effect. He's telling me about how he has a plan, but he's also telling me that I still have cancer. No he keeps reciting stupid key phrases like, you have recurrence but it seems more like this is persistent. I don't even know if he realized right there that he just told me that I've never once in the past 4 years actually beat having cancer. Its one thing for it to keep coming back... but to have never won, not even one battle, when you thought you had... well now, that's devastating. No matter how you gift wrap it-- never do radiation again-- HA... if only such a phrase could really carry with it the sort of optimism it implies.

He said something about having a plan... yeah, i had a plan once too. It involved Americorp, law school, the State Department... living a life in worlds most people would only dream about but I would dare to go. But my dreams get disrupted every morning at 5am when i need to take my little dose of reality. I stuck with law school... more so out of necessity than anything else. Nothing like knowing if you leave school for a break... or even a good old medical leave, you lose your health insurance. So you struggle through it, even when you aren't quite right, when your head and your heart just aren't quite with it.... and you chug on trying to find ways to rework your plan... you accommodate, you bend... you learn to adapt, or just to give up what you want.

And so when you find yourself 4 years later, sitting in the doctors office for 2 hours, hoping that this will be quick and mildly painless. You'll go in, he'll feel your neck, draw blood, and that will be the first step in finally, finally, getting back to having your own life not ruled by a disease you cant see or feel... and then he steps in and with his double meaning phrases pulls you back down to the reality that you've dealt with for far too long.