Wednesday, December 10, 2008



Saturday, December 6, 2008

Preemptive fear

So my eye surgery is going to be on Wednesday. And what I wouldn't tell anyone around me is that as usual, it scares the begeebees out of me. That's right, 3 surgeries in 4 years and they still scare the begeebees out of me. First there's the superficial fears about how the surgery will go. What if it doesn't work? What if I'm stuck in a state of teary eyes for the rest of my life? What if the scar doesn't heal right? How much is this going to age me? What if i can't cover it up? I'm going to be a freak scar faced individual.

Well then maybe I'm overreacting to the whole thing. Maybe i don't really need surgery. Maybe this really is bearable. But then again I was at an advisory board meeting yesterday and trying to schmooze and talk to board members, powerful people who want to do things like, take my resume, and b/c of a combination of walking there in the cold, and throwing on enough make-up to hide that I'm in the middle of exam season, my eyes were basically balling excessively, and the only excuse to fall back on was contact problems... an incredibly bold faced lie, but one i use so often, that sometimes I even say it when I'm wearing my glasses.

Then next logical question is whether or not I'm doing enough. I'm only getting my right eye done, but the left eye has been getting worse... I don't want to do this twice. Sure it isn't as bad as the right eye, but there's still big gopy tears that stream down from it from time to time. So it isn't blocked? You still call a plumber when you you have a slow drain b/c you know eventually the water just isn't going to go down.

There's the irrational fears too. More along the what if side of things. What if something goes wrong during surgery? What if I have a bad reaction to the anestetic? My mom is allergic to anesthesia. What if i can't bounce back right away? Every time i do surgery i feel like a part of my brain dies... i feel forgetful... Thought its probably just in my head (pun not intended).

All of this is frustrating. I was stupid to schedule this now... but when else would i do it? really? Side effects suck. I just want to get back as close to normal, or where i should be, than before the cancer came and started screwing around with my life. These little, seemingly insignificant side effects, really aren't that at all. They are inconvenient annoyances. Permanent reminders of what has happened. And often it is the smallest of these things that is the straw that will break the camel's back.

I'm not particularly smart or talented or motivated at anything. And in that way, I have a lot of normal things working against me, the same obstacles as every other normal person. Its times like now where I feel like the only people that should get cancer (not that anyone should get cancer) should be people a lot stronger than someone like me. Someone that has more going for them so that they can make this their big challenge to overcome. Because if you are just sort of all around mediocre to begin with, how can you really do well? I'm babbling... so I'll stop now.

Sunday, November 9, 2008

Some explanation

So, imagine my surprise when my little blog I created, pretty much just to vent suddenly has over 100 hits and people that keep coming back. I've even gotten a few messages from some of you out there, and it occurred to me that if I actually have readers, maybe I should write a little bit more, and a little more coherently, than in just those moments where I need to vent. To all of you out there who have shown your support or sent me messages, thanks!

One question that has been asked on me is what on earth I meant by the title, "Death by Lettuce." I figured this would actually make an amusing post.

I'm going to take you back now to April/May 2001. I know it was about this time b/c I graduated from college on May 1, and I wasn't allowed to eat anything. I was on the low iodine diet for the first time. I was meticulous in my desire to stick to the rules. No one was more careful, and I even took it to extremes. Basically, I just ate fruit and veggies, as I wasn't willing to risk anything else. I wanted my body to suck up every single last little drop of the I-131 so it would kill any and all remaining cancer.

Now towards the end of all this, you aren't really a particularly pleasant person. At least I wasn't. I was miserable. I was hungry. I was still gaining weight. I was an emotional wreck... graduated college, but couldn't eat my cake, and had to pack and move. So one day, my friends took me to a little Italian restaurant. I wonder how many of you out there get this... your friends and family are all trying to be supportive and things... but keep taking you out to eat... as if you can eat anything. In my bitterness, I bite my tongue and go along. And I sit with my ceasar salad... no cheese no dressing... basically a pile of green leaves. But you tough it out... you consider stealing a crouton or a piece of bread. Then you go home.... still hungry, still tires... and for me, to a room that was no longer really my own, as all i had left was a seat cushion, from what i can't even remember, and my bed, and my computer on the ground.

A basic rule of thumb for me is that I can't actually eat raw spinach. I try... I love cooked spinach... especially on a pizza. But, I've tried raw spinach a few times, and it basically makes me sick as a dog. So, basically, my lovely plate of greens, was a plate of spinach. And i spent the night curled up on my seat cushion typing sideways to anyone i could find online... my stomach killing me. And me not really sure if there was anything actually in there that i could get rid of. And so then, I thought... I'm dying... the stupid greenery is killing me... I'm going to die due to spinach... essentially lettuce. Lettuce poisoning. Death by Lettuce... and wallah... there was a title for something.

Tuesday, October 28, 2008

Some people live under the gun, i live under the knife

There's a problem that runs in my family. People have a tendency to like to be sick, or a need to go into surgery, or something like that. I read up on this a while back ago... about how a lot of people feel the need for surgery as a way of getting attention, sympathy, etc. I didn't even tell most of my friends i was getting surgery. The story goes, my parents came home while i was in the hospital and my roommate didn't even know why they were there... this is why you should read e-mails from your friends... on occasion they have important information... I also hate sympathy, doctors treat me a lot like I'm glass... I hate being hugged. I mean arbitrary hugs... hugs where people just walk through the motions... or worse expect me to. There's very few people i hug with meaning... saying goodbye, or to maybe someone i love I'll hug tightly out of fear it'll be the last chance I'll have to do so. Basically the point is i don't like the attention... Nor am i particular fan to pain... and I really don't like painkillers... most don't work for me... vicadin makes me puke... codeine has no effect... I'm not doing it for the high.

So why all the fuss about "another surgery"? Didn't I say recently that I got my first clean bill of health? (if i didn't, i apologize... i did get a clean bill of health for the first time in 4 years)... no, now I'm trying to fix all the things that got broken. December 10th will be my 4th surgery. This time around it is to fix my tear duct... or to be more precise, my tear drain. I have watery eyes. Not just a little watery... but rather the kind of watery where I'll be doing absolutely nothing and a tear will just slide down my face. Its mainly my right eye... though the left wells up in the cold from time to time. It started in Feb. 2006. I got it checked out... they said it was from wearing my contacts too much and it was just a case of dry eye. Yes, dry watery eyes. The way the explained it was that certain glands dried up from my contacts and they had enzymes that moisten the eye, so the eye thought it was dry no matter how wet it got. so they had me microwave a sock full of rice and put it on my eyes for 10 minutes twice a day. I wish I were joking.

The annoying issues came first. Constantly being in a state of tears is a little overwhelming. And oh the people who try to hug you, ask if everything is ok... But nothing is wrong... of course after a while you can use it to hide when you might actually be tearing up. For me the hard part is the fact that I'm a law student. I stand up and i talk, and argue, and do things in front of people all the time. When i get nervous, you better believe the tears well up. Nothing is worse being mid competition or a job interview with tears running down your face.

And they aren't real tears. I've done my fair share of crying over the past few years, and I've found that when i really cry, my tears are saltier. This is just water coming out with only a hint of salt.

The second issue, the far more serious issue, are the physical effects. In the past year the tears got to the point of not just being a moist eye but being full blown tears that roll down your cheeks all the time. You are always touching your eyes. They get minor infections. Eyes get crusty at night, sort of mucousy for a week... i can't tell you how many times i went to the doctor thinking i had pink eye. And then my contacts started getting blurry, and fall out a lot... which is annoying and a health issue. So i decided something needed done.

By this point I had heard that a lot of people who get I-131 treatment have problems w/ their tear ducts. And my doctor recommended me to someone deals with this kind of case regularly.

I got poked and prodded. They actually stuck needles in my eyes (like that rhyme... cross my heart hope to die stick a needle in my eye-- I'm so using this on my kids... and tell them i lied once and got 3 needles in the eyes)... ok so they weren't exactly needles... they were syringe needles... and it wasn't exactly my eye... but the little tear ducts in the corners... they stuck the needle in the hole in tried to inject them with water. this is easily the most weird feeling on the planet... and even worse when you feel the liquid go in, get blocked, and spurt out again... that's just weird.

And so now... yet another surgery. heh... and another scar. They'll make an incision under my eye and stick in a new drainage tube between my tear duct and nose... which they'll have to break some bone to do. i can only hope that this works... I feel a lot like I'm working on picking up the pieces left over from being sick, and trying to stick them all back in place again... stopping the tears would be surprisingly big.

Thursday, October 9, 2008

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:

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.

Saturday, October 4, 2008


I have no feeling on the left side under my chin... going down from there i feel only tingles into my upper chest and shoulder....

I wish i could say that the only numbness i felt was physical... but I have stopped feeling a lot of things. When I was first diagnosed, my surgeon (*note not doctor) was worried that I didn't cry. She thought I probably needed a drink and to watch the saddest movie I could think of. It's unnatural to not cry over cancer... surgery... and radiation... particularly the first round...

4 years later and my indifference towards things has only expanded into my non health life... be it my indifference to school... or even love... the last few weeks had been crap... then last week was awesome... lots of great stuff happened... and i had no reaction... null... i even got back the results that said it looks like no more cancer... instead of happiness... i felt cautious.... caution with everything... I have a problem: I don't think that I can really feel happy about anything... b/c it never seems to last... hard to explain... but you know... 4 years... keep being told its ok... but then not... it has its effects

Wednesday, September 24, 2008

And... Relief

So its been 12 days since i got my blood taken. By yesterday i had had enough, i called. Fuming and ready to harass.... or just leave a polite message on my Doctor's voice mail. Call back left a message along these lines, "Hi, I'm a nurse that knows nothing about your case, I've looked at your file and i don't think there is any change in treatment, but I will talk to the doctor and let you know if he says something else"...


This would never have happened with my old doctor and nurse... they took care of me... for fairly good reason. I've been a fucking mess waiting. Deep breaths... Place another call... more voice mail, tell them I need the actual numbers for my TSH and Thyroglobulin.

I wasn't being totally rational, i admit... but at the same time this is what i was waiting for: thyroglobulin that would tell me whether or not the radiation worked... in all of 4 years it had never been as low as it needed to be... so, in that respect sort of important to know. The TSH tells me if meds are too high or too low... and well, I've felt a little bit on the ... not quite right side for a while.

So the call came today... thyroglobulin, very good... first time in 4 years, near undetectable. And then the TSH... turns out it must of been too low... as they took my med level down... another first.


Monday, September 22, 2008

Bad Hair Day

Two weeks ago some fabulous bastard in Russia somehow or another managed to use an ATM to take all my money in my bank account. Since then I've realized I'm a bit on the poor side right now... and certain things, I just can't afford anymore and I need to figure out what I can live without... This leads to the question of whether I can live without my hair.

Its not that drastic of a leap. It starts off that i have naturally super curly hair, afro curly hair. Its so big, and fluffy and well just looks weird on me. So, last summer I got it straightened... permanently... well not entirely permanent... as I have to redo it every so often... and in here lies the rub... in the US, this costs a little over $400... poor people do not do well with things that cost over $400... so then you need to start looking for alternatives... in my case i can cut it all off, start over, regrow it curly starting short, donate my hair to cancer kids. Or i can perm it, and hope it doesn't look weird as the curl comes in. And so i sit and i pull my fingers through my hair, something i could never do curly.

Then with each stroke, and ruffle there's another reminder of why neither of these might really be an option. Its falling out. A lot of it is falling out. It has been since the last round of radiation, but its gotten a lot worse in the last month. We aren't talking a few strands... we're talking i have to unclog my tub after every single shower. I comb my hair and a handful of *wet* hair comes out... a handful of wet hair is a lot of hair. So then as I sat on the couch and hair just falls around me. I can't get it to stop. i just ran my hand through one more time, casually, 4 strand come out. i have a lot of hair, its not like I'm going bald... but i can see where its getting thinner... and I can't help but wonder how long it can keep falling out. straight or curly, long or short... I'm known for my hair... its sort of my identity. If this stupid cancer takes it away from me... its a change i don't have control over, its a change in my identity that i don't control. Metaphor for my life? Quite possibly.

So what causes the hair to fall out? the side effects of radioactive iodine are worse 2-3 months after dosing. Its been 4 months. Hypothyroidism makes hair fall out. So that would imply that my meds are off. Which is what i think... and almost hope for. It would explain the tiredness, the depression, the mental slowdown, the writers block, the inability to focus and read, to get the thoughts from my brain to my mouth, the weight gain etc. etc. etc.

And other alternatives... the other what ifs... i'm still waiting... waiting for my blood work to come in, waiting for the news of the cancer still being there. Then what, electronic beam therapy? Chemo? Well doesn't that just leave my hair shit out of luck, eh?

Its my one true vanity. Maybe in that sense it needs to be taken away from me. Truly humble me. Right... b/c I wasn't ready to give up all my material aspirations to go join the peace corps for life 4 years ago... oh wait, no, that's right, it was Americorps first... I was clearly so self centered in my need to devote myself to helping others that taking away everything in a few steps is exactly the best way to crush that sort of spirit. Sorry. I'm teetering into another topic plaguing my brain. Guess for now I'll just watch my hair fall out and sit and wait just that much longer for whatever it is that's coming next.

Sunday, September 14, 2008

2 long hours...

"Your case is... interesting." This is the last thing you really want to hear a doctor say to you... ever. But especially not when "you're case" involves 4 years of battling a type of cancer that is supposedly the "best" cancer to have, and the "easiest" to treat. I could really just create a blog dedicated solely to the idiotic things doctors tend to say. I'm almost half sure since I came around they've been forced to change their words just because I've proved to be an exception to almost every rule. But I get ahead of myself here.

It's also not an especially good phrase to say when the patient has been sitting around waiting for over two hours. When the intern comes in and also starts off by saying, "I've been reading through your file..." looks down at the 3 inch folder in front of him then turns to scroll through the computer version, "... it's really complicated,"... stops, winces, he knows that's the wrong thing to say... "its interesting." I hold my tongue from retorting something along the lines of, "well I think its pretty interesting that you are like a 6'7" Asian kid. Lets get sticks and poke each other out of fascination." I've had a bitter week and this is really the last place I want to be.

It does not help that I've been tired... yes I've been tired since May, I think. I also can't breathe, my eye tears up like its the only part of my body willing to outwardly portray how I feel more or less all the time. I'm only here for a check up; to meet my new doctor; to get my blood work done, just like i do every few months... is it 6 or 3 now? I'm never sure. I show up when I can be squeezed in. The doctor I've been seeing for years was offered a better position in San Francisco; I hope in a year to follow her. The nurse who takes care of me, has also changed locations, though just down the road... her missing presence is almost crushing to a person who strives on a certain level of continuity.

Two hours here. Its an endocrine clinic. Emphasizing diabetes and how to take care of that... only a few pamphlets for the thyroid cancer patients. And lets face it... by this point, all I can do is sort of scoff at such things.

This new doctor looks pretty young for how highly recommended he is. There lies double meaning with almost everything he says. "You're case is... interesting." This phrase encompasses about a bagillion meanings. "We have no idea whats wrong," "you defy reason," "we haven't been going about this the right way," "I could write something about you." I'm not surprised... it wouldn't be the first time since this all started that a doctor found me "interesting"... or asked to use me in a lecture... or decided to try something new out on me.

The next double meaning phrase. "We don't every want to do radiation on you again." Music to a bitter angry cancer patient's ears. "We don't think its worth the risk to keep doing something that hasn't worked." Then comes logic and reason rushing down like a thousand raging waves. They haven't even taken my blood and he's already telling me that he doesn't believe the last round of 222 milicuries of radiation has had any effect. He's telling me about how he has a plan, but he's also telling me that I still have cancer. No he keeps reciting stupid key phrases like, you have recurrence but it seems more like this is persistent. I don't even know if he realized right there that he just told me that I've never once in the past 4 years actually beat having cancer. Its one thing for it to keep coming back... but to have never won, not even one battle, when you thought you had... well now, that's devastating. No matter how you gift wrap it-- never do radiation again-- HA... if only such a phrase could really carry with it the sort of optimism it implies.

He said something about having a plan... yeah, i had a plan once too. It involved Americorp, law school, the State Department... living a life in worlds most people would only dream about but I would dare to go. But my dreams get disrupted every morning at 5am when i need to take my little dose of reality. I stuck with law school... more so out of necessity than anything else. Nothing like knowing if you leave school for a break... or even a good old medical leave, you lose your health insurance. So you struggle through it, even when you aren't quite right, when your head and your heart just aren't quite with it.... and you chug on trying to find ways to rework your plan... you accommodate, you bend... you learn to adapt, or just to give up what you want.

And so when you find yourself 4 years later, sitting in the doctors office for 2 hours, hoping that this will be quick and mildly painless. You'll go in, he'll feel your neck, draw blood, and that will be the first step in finally, finally, getting back to having your own life not ruled by a disease you cant see or feel... and then he steps in and with his double meaning phrases pulls you back down to the reality that you've dealt with for far too long.