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.

Where everybody knows your name...

I'm moving away from Pittsburgh in about 35 days. This means a lot of saying goodbye to a lot of things. I've been living up here for 8 years... that means the entire time that I've been sick, I've lived here. All my doctors are here. I actually know how to navigate the hospitals. And everyone knows me.

There is a large part of me that is going to miss this. I've already talked about how losing my last doctor and nurse was pretty upsetting. But now I'll be losing my receptionists that just wave me through without an escort to the test labs. My pharmacist who knows my entire medical history, and gives me heads up on cheaper better versions of my allergy meds, and has no problems putting in special orders for my levels of levoxyl. Even my surgeon knows me... actually hugs me. I have an eye doctor that questions me about what its like to own turtles, and a voice doctor who deemed it appropriate to pelt me with stress ball. Part of the reason they all adopted my case was because of how young i was,and the problems that came along w/ my particular experience... I somehow doubt that kind of relationship can be developed again.

But at the same time, it will be good to leave a lot of it behind. For one thing... the pharmacists scare me. There's 3 or 4 of them... and they all know my name... First and last, and how to spell it... just by looking at me. I'm only there like once a month... just its been once a month during the school year for the past 4 years. The one pharmacist hits on me... its amusing... b/c he's like in his mid 30's... and he'd by my type, if not so old... but he kept telling me how much he'd miss me etc... which is awkward.

And maybe it would be nice not to be made a big deal of... There's something to be said about not having everyone know you. It sort of implies that you aren't there all the time. I'd almost rather just being that anonymous face that just pops into the office once in a while... no special circumstances. I guess its just me realizing I'm ready to move on. And I don't think I can until I give up the comforts of staying here.

A certian level of reckless

I have to say w/ being sick, there comes about a certain level of reckless. There's a certain need to feel a certain high, freedom, be whatever it is, its there. Mind you I don't do drugs, so there's no direct route for me in trying to get this release, so it comes down to a certain amount of... recklessness. I like to drink, eat stupidly, jump off or out of things, i like to randomly hook up w/ handfuls of people... nothing too serious... but enough to probably raise eyebrows.

This last round, i just haven't had the time to be reckless till this last week... may have pushed the line a little...

Today i did my first MRI... I fell asleep inside the machine. it took three sticks of of needle/catheter thing to get me ready... it doesn't really hurt anymore. no wonder i look for something that pushes the line.

and its been 2 weeks and i still haven't cried... sigh...

What would you Do????

Today I jumped onto Craigs List to peruse the missed connections ads... one caught my eye... "what would you do???" It was about a 23 year old kid diagnosed with cancer (no big details like which kind or anything) but it boiled down to he only had 8-12 months left to live, too late for treatment, just wanted to know top 5 things people would recommend to do.

Christ, even with "just" thyroid cancer we've all gone through our own lists... whether its because we have a stereotypical new view on life to live it to its fullest... or because we really think we might not have more time...

When I was first diagnosed I was sure I wouldn't live to see my 23rd birthday. (I was diagnosed just towards the end of being 21, first surgery just before 22... I'm sure eventually I'll get through the whole story... just not yet) What I will tell you is that I've hit every branch on the things that go wrong tree, except the two big ones.... the ones no one talks about... 1) what if it spreads to my lungs and bones? 2) what if the radiation was too much, or my body couldn't take it... and i end up with leukemia? (yes, that's why they limit how much radiation you can get) and so its a lot of what ifing. And a lot of time questioning if you ought to have died... if you cheat death... Questioning what would happen if you stopped taking your pills? How long could you live? Is taking the pills in essence living on borrowed time? Its all pretty morbid... and I'm pretty sure it probably takes its toll. A lot of worry, a lot of planning... etc... Anyway, this here was my response to the kid:

Hey,
As great as it is to ask for top 5 lists, you really have to figure out the one thing that makes you happiest, which really isn't anything anyone can tell you. I got diagnosed w/ the cancer at 21, two recurrences, I'm 25 now... Unlike you, I've had an excessively stupid amount of time to think about all of this... but from the "what if" perspective. This is what I've come up with...

For me, personally, traveling is my favorite thing to do, i would leave, I've got my route already mapped out, i would sell everything i have and leave, I'd let people know dates I was going to be for most of the trip if they wanted to see me, and i would push it till i couldn't push it any further... and i would dive... I'm a scuba diver... its my passion.... and keep a blog about all of it for everyone else

After my second diagnosis i jumped out of a plane... i do recommend that... its the only time being sick where the feeling of helplessness is exciting

and, as morbid as it sounds, take one day, and preplan what you want done. For me it was to create a slide show and music for my funeral, stuck in an envelope put somewhere where it can be found... its not worth dwelling over more than one day.

And here in Pittsburgh, i would take all my friends for a round of bar golf on the south side, w/ the hopes of ending up at the west end overlook to scale the railing and sit out on the rocks w/ a bottle of wine and sunrise.