Monday, November 30, 2009
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.
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.
Wednesday, November 18, 2009
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.
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.
Monday, November 2, 2009
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...
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...
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