Robin v. The Insurance Company

So, you know, I've finally found an insurance company that isn't going to burn me at the stake for being a cancer patient.

They won't let me pay them.

Mom helps me out w/ these types of things. You know... b/c I'm a poor unemployed bum. Seeing as she has sort of a vested interest in keeping me alive and healthy, she pays my medical stuff (bills, insurance, etc.).

So she sets up a direct withdraw thing with the insurance company, then send a letter, say its all set... money never leaves the account. So she calls, and they say that the account number is wrong. Odd b/c we sent them a check. So she pays via check over the phone. More letters come saying no good. Bank says no claims have been made. So I call, again they tell me they have the wrong account number, they need to send a few e-mails to get it fixed, and call me in 48 hours. A week and half later, no phone calls, no money out of the bank. I had gone out of town during that time, mom just told me today that they never called. So I call again. They have all these notes written, but still no one bothered to tell me anything, and they only said what I already know, which is that they had the wrong account number written. So again, I have authorized paying another check, for 3 months worth of insurance. And now I wait, b/c god forbid they have a system where they can just process payments immediately.

So in dealing with this I made the mistake of doing some math.

Premiums are like $500+, deductable $3,000

Basically I'm paying about $10,000 a year... so if i don't get really awesome health coverage from my job, I'm going to need to be paid enough to put in an extra 10 grand a year.

Health insurance is remarkably like legalized gambling.

Where's da Robin?

So if you are one of my regulars you may have noticed a sharp decrease in my blogging. This is happening for any number of reasons. 1) I over blogged for like 2 months... when i should have saved posts to talk about later on 2) I have a limited attention span that isn't always great for writing and 3) I'm going on life rebound, where I wasn't able to do anything fun for a long period of time and so now i'm doing lots of fun things that take up most of my life.

What sort of fun things, you ask? In no particular order (b/c i got way too frustrated w/ trying to rearrange the pictures):

Lumberjack Championship:





Shriner Parade:






Renaissance Fair:



The Beach (at night):


Happy Hour Clams:
Rock n' Roll Half Marathon (watching, not participating):
Rugby:


Rollerderby:

Wine tasting and Jazz at the Chrysler Museum:




So there, I've been busy. And this is just what i took pictures of. More updates later. Hope the end of your summer has been busy like mine!

Thyroid Cancer Awareness Month

Yes, ladies and gents, its that special time of year, when the kiddies are headed back to school, the weather suddenly changes, and we make the world more aware about the ever increasing threat of thyroid cancer.

I'm not sure what you all like to do, but I usually post a note of facebook every year for all my friends. Its my third year doing it, and it always seems like a couple more people read every year. If you'd like to post something on your own wall, but don't know what to write or just don't feel like writing feel free to use mine, and let me know if you think there should be anything else in it for the average non-thycan to know:

" It's September once again, meaning it's time for me to make my yearly public announcement about thyroid cancer. So, here it is again, my thyca spiel:

First a bit about thyca… Currently its one of the few cancers in the world that is actually continues to increase. A record 37,340 people are expected to be diagnosed the U.S. alone over the next year. There are actually a few types of thyca, that vary in degrees of aggressiveness, etc. For me I have Papillary with a couple of other adjectives attached that I just tend not to pay attention to. It starts off as abnormalities in the thyroid, and can then spread to the lymph nodes, and if left untreated, the bones and lungs. Unlike every other cancer that spreads to lymph nodes, its not as vicious, nor does it spread as aggressively… its sort of a lazy cancer in the respect (I didn’t come up with that… that’s just how a doctor told it to me). No one is really sure what the cause of thyca is. It’s linked to nuclear radiation, and genetics, usually affecting woman over the age of about 45 (please note I really do tend to be more of a freak case diagnosed at 21 w/ no family history or any rhyme or reason for it).

The plus side: thyca is totally treatable and most of the time not deadly, unless it goes a long time w/ out diagnosis or you are really, really old… (like Judge Rehnquist)

The negative side: Its sort of a permanent thing. Most of what your everyday person thinks about cancer is that you have it, you get treatment, it goes into remission, and disappears forever. I’ve personally never even heard the term “remission” when it comes to thyca… you have it or you don’t, and you have to do blood work, etc. now until the end of time. And for most, but most likely all of us, we lose our thyroids. That’s an entire organ, gone… a rather important one at that… controls metabolism and all that’s tied in with it… but we take pills and more or less function “normally.”

Treatment is pretty basic. Surgery and Radiation. NOT CHEMO… that’s actually something entirely different… and generally doesn’t work on thyca. The radiation is done via I-131 (radioactive iodine) taken in a pill. There’s a rather frustrating diet that gets tacked along w/ it, called the Low Iodine Diet. Here is where, even in the past 4 years, there have been major improvements in treatment. The first couple of times I had to do the diet and radiation I had to also go off all meds, sending me into a state known as hypothyroidism… basically shutting down my metabolism. Hypo-hell, as it is commonly referred to as, is easily the worst experience you can go through… doctors have now developed a shot that, while for some people messes w/ their stomach, means you don’t have to go off of your meds, keeping you more or less normal. So those of you with income jobs looking for something to donate money to, might want to peruse the www.thyca.org page… trust me, the research is for a good cause.

So what do I want you to do:
Be ALERT. Check your neck, next time you go into your doctor make sure he just gives your neck a quick look. The signs of thyca include a lump on your throat, swollen lymph nodes, weight gain, hoarseness to your voice (or general voice changes), or just a general slow down. Now like I said, I’m not trying to promote paranoia… just awareness. Its not something we can prevent… at least not yet… but it is something that can be treated.

Thank you all for reading. If you have any questions, feel free to shoot me a message or check out www.thyca.org or join the Thyroid Cancer Awareness group under the Causes application… where you can read stories from other young survivors.

So, pass along the word... Thanks!"

In other thyca related events, the annual thyca conference is in Boston this year, October 16-18. I'm slowly trying to figure out how to get myself there, and recommend, if you have the time and money, you also check it out.

Also my apologies for not posting lately. I've been uber busy... to such a point that I might even actually tell you about my real life.... ooooooooo

FOOOOOOORRRRRRRRREE

Today I did something I haven't done in about 3 years. I played golf.

Well, not so much played, as I went out to the driving range. But the point is the same. I found my clubs, threw on some khakis, a polo shirt and a hat. Laced up my shoes, and slid on my glove. Chose the absolute hottest point of the day, and hit the hell out of some balls.

So why is this such a big deal? Enough so to make it to a blog post?

I started golfing about 4 years ago; just after the first surgery. Turns out, I was sort of a natural. Even took a class w/ my mom one day... the teacher told me that if I worked at it I could probably go pro... the same was not said to my mom. It was sort of cool to have something new that I was pretty good at.

So the following summer came along. This time, I had just had the neck dissection. I'm guessing this was more towards the end of the summer. Finally got a chance to get back out on the golf course. Took a swing... and it was awful. The whole game was the most painful experience ever. For the neck dissection, they had to slice through my neck/shoulder muscle. As the doctor explained, when it healed... it sort of developed a protective reflex. So when I went to swing, my neck/shoulder of my left arm would curl up, which pulls up the driver, and causes me to miss the ball. So disheartened and embarrassed, and afraid to actually golf w/ other people, I just haven't picked up a set of clubs in 3 years.

I only live about a mile from a driving range. I had the time today, and the weather had supposedly cooled down some. So i figured... fuck it. I'm just going and hitting some balls. I've never been out on my own. It was great. My swing still needs a hole lot of work, but it was looking significantly better than it did 3 years ago. It was really great to just be out there. I think that its something I will be doing relatively often. Maybe in about a month I'll work the confidence back up to even play a round of actual golf.

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.