Repetition, Recognition, and Limitations

Part of being a cancer patient, especially with a lot of recurrence, you get sort of used to doing things again, and again, and again, and again. Tests, exams, blood work, doctor appointments, arguing w/ the insurance company, surgeries, radiation, hearing bad news, hearing decent news, hearing hopeful news, repeating said news to family, figuring out the best way to repeat news to friends. Stop. Repeat.

Maybe that's why repeating other life events just seems... natural... to me now. I'm repeating the Bar exam, I'm repeating my job search... I've been comparing my life to limbo a lot, but now that I think about it... it's a lot more like repeat. Now I'm sure it can't stay like this... but for right now, I'm getting to so everything again.

While I started Bar prep classes again yesterday... its actually the job interview I had yesterday that sort of set off this particular post. I wasn't planning on applying for any jobs right now. My classes are at night, the Bar is at the end of February. Obviously, I'm going to spend most every waking minute cramming. So the idea of working isn't particularly high on my list of objectives right now. But then a friend of mine said someone told him about a position working for a congressman, and he wanted to pass my resume along, and it just sounded really cool. And so, I took on my 7th ( I think) interview.

I mean it had it's downfalls... no pay... a year long commitment... really bad pay. But it was a step in the door for something I would be interested in doing. So I went to the interview, she liked me, said I was way overqualified for the job, then asked if I really thought I could juggle studying for the bar and working full time. A recent lawyer herself... I had to be honest... as much as I wanted the job it meant risking another failure, and she understood completely. I would basically be a glorified secretary for a year... it was a step forward but a massive leap back. She also knew that it would be a buffer position for me. Something I would just want to do to fill in until I got my license. She basically said all the things I've considered when looking for in between jobs. And once we got that out in the air, we just chatted like new friends comparing our lives and just... talking.

Mom, in her ever supportive role, reacted by telling me how she worked full time, while raising me, pulling 16 credits, and a 3.8 GPA and still found time to study somewhere in between. I hate, hate, hate, hate, when she compares her life to mine. I appreciate that it was hard for her... I was there... There's about 50 million perfectly true responses I could make to her but choose not to. And even now, it sounds a little too contemptuous to write out. So I'm just going to say I know it was hard for her... but it was a significantly different situation. She went on to even be like, "I wonder if I was a good mother then," and "I wonder how we kept it together then." My response was, " I wasn't a heathen wild teenager." Which basically meant I took care of myself, the house, and kept things working. It wasn't particularly hard... sort of just came naturally to be very prudent and responsible because I could easily see things going all to hell if I wasn't. A remarkably common theme when looking at how I've dealt with the whole cancer bit.

Sorry, I'm sort of pointlessly rambling here. Basically I just don't think she ever looked at the things I was doing to keep things going. Just like now she doesn't look at what I'm dealing with; she only knows how to see what she's doing or has done.

So... I don't want to say I didn't get the job. I think if I had committed she would have taken me in a heartbeat... But I was honest. I was actually honest about what I thought my limitations were. A first for me. And so we agreed that come March, when I'm done w/ the Bar, I'm to give her a call and see if anything is open.

I think for the first time in my life I am afraid to see where my limitations actually are. I've spent a lot of time pushing myself to the limits. Taking on too much work. Trying to do too much in life. And it's been absolutely fantastic. But I'm afraid that right now, if I push it and cross the line... I'll be stuck here forever. This is new to me. Even before cancer, I tried to push what I could handle (of course in a responsible and prudent over-achiever manner... not a crazy partier sense). Threats to my physical life sort of magnified that attitude. But now... its my long-term life that's threatened.

Am I growing up? Am I just growing tired? Is this just a phase? I don't know... but I know its what I need to do.

Please Don't Spam Me

I'm a little irritated that I should need to go and post this, but its become enough of an annoyance that I have to say something. Don't spam my comments. I have comment monitoring on, so sending comments entirely in other languages, or w/ links to UK Escorts, are never ever ever going to go up, and they just waste my time.

My apologies to legitimate readers.

60+ Christmas Cards

I went to a funeral tonight. I am.... not so good with funerals. I avoid thinking about the person. I fuss about what to wear. And I search for exits like I run the risk of being trapped there. I feel awkward in churches now. Especially Catholic churches, where I know all the words to all the songs, and can't help but compulsively sing along. Tonight, as most people in attendance got up to receive communion I watched as my step-grandmother got up, but my Aunt, her husband, their two children, my parents, me, and my uncle and his wife... didn't move. And it was a relief b/c I was afraid of being the black sheep that wouldn't get up. I know I can go through all the movements, but really my heart just isn't in my religion anymore. But that's not what this post is about... it was just merely an observation.

There was well over 200 people in attendance at the funeral. Pat had a way of making every individual person feel like they were her best friend in the world. It's hard not to shed a tear for someone like that. But it also makes you think a lot about who would show up at your funeral.

Death doesn't consume my every waking moment quite the way it did when I first heard the word cancer. I think in general, even though thyca isn't all that deadly... its still the "c" word; it just triggers thoughts about what comes next, and what I would like to have done.

Funerals are tricky. I know that I want everything planned out before hand. I don't want a loved one guessing what I would and wouldn't want. I like old traditions. Like coins over the eyse to pay the ferry... I think that's pretty neat. But I believe I'd want to be cremated. I would donate everything possible to medical stuff. Even my retinas, if they are able to use them. Science has kept me alive this long, and in reality thanks to science I'm essentially living on borrowed time. It's good to give back.

I wouldn't want a big Catholic mass... A little awkward with how many non Catholics, or even Christians I have as friends. Maybe just a reception hall. I don't even know if I want my ashes there. I do know that if I did have some sort of service, I would want the recessional to be a New Orleans style funeral march... Pat chose "I feel good"... The immediate change in pace made almost everyone cry.

I would want to film my own message. Say my goodbyes. I would set up a slide show. I know a handful of songs I love: Beatles, "In my life"... the Cure, "Please remember me"... and Violent Femmes "Sweet World of Angels"... plus a few up beat songs. And I would write letters, if I had the time, to those that would need them.

But sitting in the church tonight, I couldn't help but wonder who would come to my funeral? Think of which friends would be devastated... who would help with arrangements... tonight, my mom arranged someone to do the flowers, and my step-dad delivered all the alcohol to the reception. All for his mom's best friend. Would someone do that for me?

How many lives have I really touched? How many enough so that they would want to say their farewells? How loved am I really? I'm not good at telling people or showing people how much I care. I'm emotionally reserved... or defunct... in that area. But I consider a lot of people to be much closer friends to me than they might know. I'm not great at keeping up communication, but I do it more than a lot of people. And I have little ways of showing that I care. Like Christmas Cards.

This year, I've already written out more than 60 Christmas cards. They go to friends and family. To random people I've met during my travels. To old friends I want to reconnect to. To old bosses, and doctors, and a couple of teachers that have affected my life. At first I questioned my motives. Am I just shallowly filling out cards? I question my motives on a regular basis, if you can't tell. I can't help but wonder if I'm really as genuine as I want to be. But for the cards... its my way of showing these people that they have impacted my life in some small way. Just enough to keep me thinking about them... even if I don't say so on a normal basis. I would like to think that has some sort of impact on people. Even if i can't write a note in every single card... just the idea that your being thought of or remembered... thats a good feeling.

And its only something that's gotten worse since i got cancer. I'm afraid of being forgotten. I want people to remember me. And I want them to know I remember them.

So do I think that several hundred people will show up to my funeral if i died tomorrow? I don't know... maybe. I'd like to believe that all these people, that I write my cards to, they have been impacted by me in the same small way as they have me. And there is a certain satisfaction with that.

Dealing with Cancer

Today, I am going to direct you over to CancerDirectory.com, where you can see my post, "Have you cried at all?"

They asked me to write about facing or dealing with cancer. It was a pretty fun little assignment, and like most outside ideas, got me thinking about a whole schlew of things I hadn't thought about in a while.

While you are there, I recommend perusing the site a bit. Rather than being another cancer support network, its more like an information hub. It brings together the latest in cancer news and events, reviews support sites and books, showcases bloggers, has a physican's directory, and more.

Thyoliday Blues and Truths

Intro:

Thyroid diseases and thyroid cancers are fun, right? Unfortunately not; they deeply affect us as patients and our families, indelibly leaving an imprint on our minds, bodies and souls. None of it is easy. If we’re going to bring awareness to this disease, we have to come together as a family. Our collective voices have the power to invoke change. Because the holidays are a time of celebration with the people we love and a time to reflect, what better way to ignite change, and move our stories forward, oh and have a laugh along the way, than to connect with each other?

Questions:

1) Have the holidays and your experience of them changed since you've been diagnosed?

I was about to say no to this question when I was suddenly smacked by the realization that one of the biggest changes in holiday's is directly related to the thyca. My having cancer got my parents to talk to one another. Not just talk, they've become friends... friendly even. It's weird. Its weird to have my dad show up to holiday things w/ my mom and step dad, and step dad's family. It's weird to have my parents coordinate things without yelling or using me to play telephone. I don't think I watched them interact this much since we moved to the US when I was 5. They did the split up/get back together thing from 6-9th grade, and then that was it. Then I went in for surgery, parents sat on opposite sides of the waiting room forcing me to wander back and forth and chose who to sit next to, then I wake up post surgery to them laughing and making jokes over me. I thought i must have been on some good morphine. So yeah, in that respect, cancer changed everything for my holidays.

2) What is your favorite holiday food/dish from childhood? What is your favorite dish now? (Did you have to change your diet at all since being diagnosed?)

Butter cookies... and still butter cookies. My diet changes on regular basis. On the LID, obviously that's a change. Back in the day, once i got off the LID I basically yo yo'd the other way... F*k salads... and lettuce... evil green leafy plants. But then just trying regular dieting. Trying to figure out how not to eat soy or walnuts b/c it interferes with the thyroid meds in ways i'll never understand. Man I want some butter cookies....

3) Off the top of your head, is there one comment from friends or family that sticks out in your mind as a what-were-they-thinking kind of thing that brought your disease front and center for everyone at the holiday function to hear about?

I think I get the 20 questions at every function. Or worse, the unsolicited advice. But this isn't just based on the cancer, and there hasn't been anything front and center that sticks out.

4) How do you get through the stress of the holidays, paired with a disease? What are your coping strategies?

Butter cookies

5) Do you feel the need to enlighten and educate your loved ones about your disease when you get together for holidays, as people are often curious about our illnesses? If so, how do you educate them?

No. I avoided educating my family like the plague. It goes back to the 20 questions bit. They tend not to be good listeners, nor perceptive ones. Like when I change my tone, and stop eye contact as to say, "and we're done talking"... I have a strange family dynamic like that. No one really wants to hear what I have to say, they just want everything to be ok, and voice their advice on how they would handle things and criticize what they think I do wrong.

6) Has your disease ever showed up at the wrong time on a holiday and ruined the day or moment?

Senior year of college spring break, officially told i had cancer, surgery w/in the week. College graduation, just started LID. Every summer break except this year since 2005 begins with either surgery or a round of radiation (be it ablation or dosimetry)... Last year, Christmas break... I had a tube running through my eye to my nose... Lots of antibiotics and glasses for christmas... and new years... I've also skipped a few spring breaks to do my thyrogen stimulated stuff...

I just want to point out here, when i first read these questions, I really didn't think I had anything to say. I think I had actually blocked out all of this stuff, like family reactions, the connection to holidays... maybe it was just selective brain fog...

7) Have you thought about submitting a letter to Dear Thyroid? If so, would your letter be a love letter or a hate letter? Would it be to your thyroid or from your thyroid?

I submitted a letter a few months ago, from me to my thyroid... definitely a hate letter. A bitter angry break-up hate letter. I loved it. I fueled it with about 4-5 years of anger and rage. I'm now totally stumped about another letter as I'm pretty sure I covered everything possible the first time. But I'm thinking if I do it again it'll be from my zombie thyroid... seeing as my level of recurrence is remarkably like sequels to bad horror movies. "yes there were just a few cells left, totally undetectable, but they mutated and took over the world... aaaaaaaaahhhh"

8) If you could tell the world one thing about thyroid disease (or thyroid cancer) that you feel they don’t understand, what would it be?

Removing an entire thyroid is not a cure for thyroid cancer... its a treatment... a painful life altering treatment... even radiation is not a cure for thyroid cancer... it does not go in and kill cancer... it goes in and kills thyroid cells, which presumably have cancer.

9) What is the greatest misconception regarding thyroid disease and thyroid cancer?

I have no idea... probably that it's an easy cancer to have, the best cancer you can get... doctors that say this should be smacked, or at least glared at... what should be said is that this is the cancer that is least likely to kill you and that it is treatable... don't spin it to sound like a walk in the park. Its misleading.

10) What is the stupidest thing someone has said to you regarding your illness that, to this day, still makes you laugh or makes you angry?

This happened while carving pumpkins for Halloween this year. I can't remember exactly what I was doing but my livestrong bracelet just snapped. One of my friends just blurted, "looks like cancer won." Mind you, if you read my blog, you should know by now that i can take and throw back some pretty bad cancer jokes, but for whatever reason that actually just hit me like a brick.

And seeing as I don't want to end on that story, I'll end on a more amusing one. I was visiting some friends up north and we were at a Renaissance fair, along with some of their friends that I didn't know. As we're leaving there's this giant... and my friends' friend, was like, bet he has a thyroid problem. My friend Andrew went on an instinctive hug/back pat, "i'm so sorry," ... "dude, not cool"... while i meanwhile was cracking up.

Dear Thyroid is a literary thyroid support community and blog. Thyroid patients are invited to submit Dear Thyroid letters; love letters and hate letters, among other thyroid literary things, such as Thyrants, Thygraphs, Thykus, Thyetry and Thysongs, etc. Our goals are for all of us as a community of patients to connect with each other and our diseases, and to bring awareness to thyroid diseases and thyroid cancers, we need and deserve a face and a voice. For our non-literary crew, we have monthly Flickr pools. Recently, we launched Dear Thyroid Local Meet Ups for offline support. Dear Thyroid Forums are forthcoming in December.

The Least Common Denominator of Death and Illness

When I first wrote this post on Friday afternoon, things were different. Rather than change the original post, I decided to just write this bit at the beginning. Our close family friend, Pat Stetic lost her battle against cancer tonight. All of my thoughts go out to her and her family. RIP Pup, you will missed.

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Being told I have cancer, again, and again, and again has sort of worn down my reaction to the news... at least my initial reaction.

But in a scary new way its started happening when I'm told something is wrong w/ a friend/family member. I like to believe I'm not really cold. And I care, I really do care, and I think about it... but I just seem to be lacking the emotional response. And I'm thinking that it might have something to do with just how bombarded I have been lately with bad news.

I guess it started w/ my aunt dying in May. Then my cousin on my dad's side committed suicide in October. It was discovered that my mom's dad had two aneurysm. He went to have surgery on the one, but it became a more complicated and invasive surgery because he has so much tar built up in his system that they couldn't get to it. He was in the hospital for a week over Thanksgiving. My step dad's mom got three bad reports in one day. Her cousin, a woman who I networked with about a year ago in an attempt to get a job, was diagnosed w/ a rare cancer and given a week to live. A close friend, and my neighbor that I've shared drinks with caught a lung disease and died w/in the week. And a very close family friend, who I have been close with as well, took a turn for the worse in her fight against cancer. We were told just before thanksgiving that she was only expected to live another day or two... she's still hanging on. That day, my step-dad's mom ended up in the hospital w/ crushed vertibra. She came home, and a week later was back w/ blood clots and pneumonia just in time to spend Thanksgiving there. The brother of my cousin who died ended up in a major car accident, but is doing better. But then his dad had a heart attack last friday, after thanksgiving; thankfully he is back in good health this week. Then today one of my friends informed us that her husband was just diagnosed with testicular cancer.

I'm emotionally numb at this point. My mom, she can cry at a drop of a dime and openly show how distraught and attached to people she is. I can't. I don't know why. I think my reaction emotions are all mental. I tend to think and dwell on these things. For the last bit of news, my reaction was more of a "finally, someone I may actually be able to support and be helpful." It's also hard to know how to react because of how distant I really am from all these people. I've felt like a perpetual third wheel to all sides of the family for most of my life. Often, even telling me what's going on is sort of an afterthought.

I wish I could be closer to people, especially my family. It took me years to get back in touch with my dad's side of the family. He lost touch with them, there was a fallout between them and my mom over a bad joke. And I was the one left out, growing up with the knowledge that family can in fact cut you out. Mom's side of the family isn't much better. I don't think anyone has made any attempt at interacting with me as an adult... maybe my aunt a little bit. But no one ever calls me just to talk or anything. I just don't feel like I have a relationship with any of them. Love them, care about them... but not attached. And my step dad's family... well, closest thing I've known to having extended family around, but i came into the family at about 13... and will always sort of be the random step child.

Backlog

Today I opened gmail, and typed in "cancer" only to see a million and one different e-mails that have been piling up since August. After the bar exam, I just haven't been keeping up with very much of anything other than job searching... and attempts at dating that went down in flaming glory (something I need to get around to writing about). Part of this I've mentioned in bits and pieces over the past few months as I'm afraid I was getting too wrapped up in the cancer stuff... the other part is, well... I get yelled at if I spend too much time on the computer at home. I'm 26, and I get scolded. Something about how I should be pounding the pavement and going law firm to law firm soliciting myself. I hope there are other lawyers or law students out there reading this b/c the reaction I've gotten when I told lawyers this is something along the lines of... "hahahaha only if we can charge you for showing up on our time." And the last part of this is that I'm a little bit lazy/a gemini w/ a relatively short attention span. The mere fact that I've been fairly consistent at blogging for about a year now floors me.

But, now I'm back in the library, where I will find a million and one ways to actually avoid studying.

Today, was going over the backlog of cancer e-mails. First, I just went through and deleted all the Planet Cancer comments... I always read them, just never delete them. Then I worked my way backwards. There's a lot of up and coming health sites out there looking for bloggers, and ways to advertise. Wellsphere, Everydayhealth, Navigating Cancer, cancer physician's data base... Do I really want to participate in all of them? Do I really want to post links and publicize them to you all? Are you other health bloggers also being inundated with these e-mails?

I mean I love the ego stroke. I love people telling me that they enjoy my blog, find it inspiring, think I have a unique outlook, etc. etc. But I have no idea how much of these are just form letters w/ my name and blog pasted in. So I've been going through these sites, and everything has its own little appeal. A lot of repetition. Then it occurred to me that people searching for info on their different diseases and things all end up in different places. Some sites might appeal to some people more than others. And for me, to get the blog noticed that little bit more, and to provide a good hub for thyca information, I should just get myself out there as much as possible. How else would my blog take over the world?

One of the more interesting requests I got was for a book. They asked if I wanted to review an early edition, or to do a book giveaway on the blog. I thought that was pretty cool, but I'm not big on reading health books. I know how weird that must sound considering the original idea for this blog, and how many other blogs I read... but books are my special place. I know going to different legal conventions and things, people talk about all these books they've read on international affairs and things, and they ask me what I think, and I look at them and say something along the lines of, "the last book dealing w/ international affairs that I read for pleasure was Jingo by terry pratchett." I am working on reading "Everything Changes"... It sits next to my bed in a pile with "An ordinary Man", "Dracula", and "Pride Prejudice and Zombies"... my Pratchett book of the month tends to be in my purse. So I think it's a cool idea, and I'm totally flattered by the offer, and maybe if I didn't read at a snails pace I'd seriously consider it, but right now... book reviews just aren't my thing.

So to wrap it all up: If you have sent me an e-mail that I never responded to, I'm sorry. If you still havent' gotten a response by the time you've read this, I've managed to carelessly delete it, and you should e-mail me again. I'm in the library everyday, so I'll be back to being responsive. If you want to ask me to blog on your site or to put up a link, I'm a sucker for that kind of stuff (though I'm not just posting every link, I do try to maintain some quality control).

Here I go jumping back into the blogosphere... next up, I'll be posting my Thyoliday Blues and Truths for Dear Thyroid on Sunday 8-)

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.

A Follow Up on Brain Fog

Just in case you haven't read this yet, I am bringing it up to your attention:
When Cancer Muddles the Mind

Its an article by Kairol Ronsenthal talking about thyroid cancer and brain fog. I commented on the article about how maybe if enough of us yammer on about this our doctors might take notice. I can't think of a much louder written forum than the New York Times. So I would say if you have had problems, you should also comment.

Then there was Halloween, the best holiday ever...

Yup, Halloween is my all time favorite holiday. There's no real explanation why... it just is. All fun, no pressure. A night where you can let your imagination go all sorts of crazy.

My Halloween involved a kids party, trick-or-treating w/ a cooler of beer in a wagon (i hung out w/ my step-dad for this), meeting a young german dude, who will be here for about 9 months, then bonfireing back in my back yard, where a couple of my friends also joined me.

But the most awesome part... was my sweet ass Heath Ledger Joker costume...

Over it...

So it quite randomly occurred to me about 5 minutes ago that I am quite done with having cancer. Clearly cancer is a passing fad, and i've been there, done that, and have more "important" issues accumulating on my plate to continue dealing with cancer. *this should have been read with absolute sarcasm in mind

It's been about 5 years since it was brought to my attention I had a lump on my neck. As my mom put it the other day, it seems like my life has stagnated and I have issues with moving on. Apparently so does cancer.---> random robin side rant... i am literally in limbo... i can't get a proper law job till i pass the bar, which is in february, and, I don't know if you have tried looking for a job lately, but it ain't pretty... I'm in disagreement with mother about whether or not I'm choosing to be in my current situation... and whether or not i've put forth any effort and follow-through... sometimes its just easier to let her think what she believes

So now I need to go find myself a new doctor down here, or schedule whatever I need done up in Pittsburgh... B/c the cancer just keeps hanging around like that guy you broke up with who doesn't get the hint, I believe i need to do thyrogen shots, bloodwork, an ultrasound and possible fna, and maybe another mri or pet/ct... they like those. I have delayed in this b/c, well, I've been pretending as hard as I can lately that its not there. I've stopped reading cancer blogs, I've stopped writing. I saw a brief window of opportunity to make it all disappear in my head. Like when i travel and backpack... something may be going on, but if i'm in the middle of a jungle, there's nothing to be done, so i can not worry about it.

And its good...not to worry that is. I've got a lot to worry about in life. I would just really appreciate this to be done. Or to go back and never have it happen. I'm over the cancer fad.

And then to New York...

So, I'm going to New York on Wednesday. I haven't been in ages and ages, and it seems the person I was hoping to meet up there won't be going anymore... so I'm going on my own. I'm going to be staying with my step-dad's family... which is a little odd, as I've never known them outside the presence of my parents... which is actually pretty true for most of my family.

I'm going for the International Law Weekend. A little odd to do now that I'm still not licensed, but a good step in networking, and being a shiny happy person again.

So, I'm there from Wed. morning -Sunday evening, and wondering what on earth I should do when I'm not listening to lectures. I realize this is a silly questions... but really... its new york, I haven't been in years, I have limited time, and I'll be running around by myself... oh, and its my first time there when i'm over 21... I'll be spending all day tomorrow trying to put together an idea of what to do.

And then there was failure...

So yeah... you may recall that my summer was spent studying for the bar exam.

And then the past month I've tried to get out and enjoy what was left of my summer.

And then on Friday at midnight i got the news that i failed the bar exam.

And I drank with my mom until about 5 in the morning.

Then i cried to my best friend begging her to drive down from pittsburgh b/c for really the first time ever i was cashing in my "i need you here now" chip... which she couldn't do.

And then I yelled via g-talk to my other best friend in Korea. My main point being that for fucks sake after everything i've been through for the last 4 years, I deserved a fucking break. Surely in the great karma scheme of things, i deserved passing the bar exam as a balance to having cancer.

And now I know that I handle all major blows in my life like i handle being told I have cancer. I get pounded. I drink a little. I worry myself sick before the news. Develop multiple back up plans. Play the shiny happy role to my family... b/c god forbid I show how I actually feel or they start going off about how i'm depressed and maybe i need medication etc. etc. etc. Can't cry in front of mom, b/c she'll cry too. Because you know... this happened to her, and she only knows how to make herself feel better about it. And she wants to talk about it like it'll change things. And she had me check my results a million times over in case maybe they put more names on the list. And when I say I don't want to talk about it, she just said she was sorry I didn't want to talk about it and continued to do so.

The hardest bit though, was this morning. They wanted me to go to a breast cancer walk with all of their friends (they being my parents). And I couldn't do it. I was literally paralyzed by the idea of having to see everyone, look at these people that aren't my closest friends... b/c they don't comfort, they would ask questions... what are my plans, what will i do next. False condolences and disappointment. The awkwardness b/c they don't know what to say. Its almost exactly the same as with the cancer.

I tried very much to stop my mom or anyone else from playing up too much what we would do once we found out i passed. I had the same pit in my stomach that i do after a cancer screening that i know i won't like the outcome of. I'm afraid to get excited about things like this. I fear getting my hopes up. Because when it matters the most... it hasn't worked out for me. Not really. Not in 4 years.

I know the bar exam is not the same as cancer testing. But like cancer testing, i can't move forward in my life without passing it. Not really, at least.

And it's also led to the realization that I really have lost the ability to hope for things. I'm too cautious. I naturally just prep for the worst so I can weather it without being entirely crushed.

And that's my life now. And its sad. And I don't know how you fix it.

How far should we be monitored? #3: Memory

Brain Fog; it's not just a chemo problem.

So many of us out there since losing our thyroids also feel like we're losing our minds. It's awkward to talk about. Who wants to admit that their brain just is not as sharp as it was? I sure don't. But when does it become a real problem? Do we want, or need to know if we have in fact lost a piece of our mind? Or is it really better to just stay in the dark?

So this is my crazy idea. What if before taking out the thyroid, we do memory tests? And then do them once a year or so.

Then, if there is a change, maybe the doctor could recommend vitamins, or brain teasers, or something. Right? Surely it must be better to know everything isn't just in your head?

I'm waving on this one. I hated the feeling of being slower. Actually, losing mental capacity is one of my top fears in life. Especially knowingly losing it. Knowing that I knew or understood something before, but not now. Recognizing that it seems like its more than just getting older. But I'm conflicted on if I wanted the cold hard truth on the matter. Unless I knew something could be done.

Another reason to pay attention to memory is because of how thyroid issues are tied to dementia. I would think that at some point thyroid patients would want to start doing regular checks for that.

I'm going to be vain for a moment, and say that I do in fact have a pretty good brain, all things considered. I feel like it was better. And well, that just sucks, no eloquent way to put it. From an emotional standpoint, I think it would have been better to know beforehand to expect the brain fog. I feel like it would have done me personally, on an emotional level, a lot of good to know, to have a reason, to not just feel like I had made a horrible mistake going to law school. Even my first year, if I had known, I probably could have asked for extended test times and things, when the brain fog was the worse.

And now I'm babbling here. What to you all think?

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.

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.