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.