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?

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.

Worst Day of the Year

Whoever invented February 16 ought to just be shot. Its just a bad, crappy, awful day. And this year has lived up to its full potential with flying colors.

In a nut shell, my cancer markers are positive and there is a new nodule in my thyroid bed that wasn't there before, but is unfortunately too small to biops, so i'll be doing an MRI in March.

This never ends.