Tuesday, November 23, 2010

Losing your cancer virginity

Cancer is surprisingly like sex. We all have stories about our first time. There's even bases before you "score" so to speak. And I don't think ever getting another diagnosis of cancer is every quite the same as that first time.

First base: Doctor finds a lump
Second base: tests
Third base: the phone call
Home: the face to face diagnosis

First base:
Student health... I was there for my yearly. The nurse practitioner walks in... first thing she says to me is something along the lines of, "so is this your follow up for chlamydia?" WHAT? NO, what are you talking about?... something about how last years tests showed whatever, someone forgot to call me, etc... (later this was discovered to be just a mix up, but fantastic start)... next, physical, "Do you know you have a lump on your neck?" Huh? Ok... Not really sure what thats all about...

Wednesday, August 25, 2010

A friend lost

I learned today that I lost a friend. We weren't close friends... we've had drinks together at parties... he was more of my friend's friend... people thought that we should be friends, and tried to get us to be friends because what we had in common was that we were both law school cancer survivors, and then young lawyers dealing with cancer. I think for this very reason we didn't actually become friends. Because it seemed like we were supposed to have this connection... but in real life, when you are with your friends, and hanging out... that isn't necessarily what you want your connection to be. Like so many things, I don't know if that makes sense.

I think its the same reason why I'm no good at support groups. Why I can't seem to muster the motivation to go to a cancer summit... talk one on one, or face to face with people. I don't like this world in my real world.

And yet, even keeping distance between us... I find that I am still hurt, that apparently there was this connection... a silent acknowledgment that someone else had a general idea of what you were dealing with... even if the circumstances were totally different. He was a mental cushion... someone I knew if anything worse happened to me I could call up and be like, how do I deal with this. I'm guessing it would have been a very awkward conversation... but it was an option that is no longer there.

RIP Adam Thomas

fuck cancer

A post from Adam's work

Thursday, July 15, 2010

"I'm not quite dead... I think I'll go for a walk now... I feel happy... I feel Happy!"

Ok, so I went on a hiatus... a very long, hiatus. A very long hiatus that may or may not continue. But, quite frankly, I haven't had that much to write about. And seeing as I sit in front of a computer all day doing work, and not even fooling around on the internet... I lose motivation to write when I get home.

So cancer related stuff:

My Peace Corps application got put on hold b/c they wanted a pathology report from May 2009 for a fna. I will not be leaving in September... and I'm still waiting to pass medical.

I despise being attached to a pill. I didn't have time to refill my meds when I normally do b/c I was out of town. I got to the pharmacy late yesterday, and she said she could fill one... I said Levoxyl... she filled allegra. I am one of those where i can feel when i don't have my meds... whether its all in my head or not doesn't matter... It gets to me.

I went to a law conference purely to go to the seminar on cancer patient rights. I made the mistake of sitting under the ac... this makes me fall asleep... I nearly fell asleep during the one thing i wanted to see. But out if it I learned about LINC

Pretty neat group. Help people w/ legal and business issues dealing w/ cancer. What I found really interesting is the guy who got up and talked about people losing their homes b/c of medical issues and not being able to pay their mortgage.

I was like... no shit, that's what I do! I modify loans and keep people out of foreclosure. We do free consultations, and have a damn good track record when it comes to saving peoples homes. So I'm working on extending our services out to LINC. I mean even just a free consultation to tell people what their options are is sometimes all people need. If you are in trouble... please please please don't go to some out of state mortgage broker company, or something that sounds like its a government program but asks for just an upfront fee for help. And definitely don't go to someone who guarantees you a modification or they can save your home. Try to get a modification yourself, work with a HUD counselor... then find a lawyer. One you can meet with. I'm dead serious. As cancer patients we are hell of persistent people that know about loop holes and know about how to wear down red tape... so of anyone, I would say our group in general can do this stuff on our own. But... if you are tired, and want someone else... use a lawyer and only a lawyer. I know they are hard to find... but there are too many scams out there. Hell, if you are out of state, I don't mind you calling me to talk things over, and if you want me to check on someone to see if they are legit, I'll do it for you. Just shoot me an e-mail. I'll try to organize this in a better e-mail later.... I'm suddenly having a flood of ideas.

I think I'll stop now, and regroup my thoughts...

Other random things, I'm trying to join up w/ the young lawyers group w/ the Virginia State Bar who just put out a cancer rights booklet... If you want want, or a bunch to distribute, I'll see what I can do to get my hands on some.

It also looks more and more like I'll be here long term. I'd like to start up and i[2]y in the area. Are any of my readers out there in Hampton Roads?

I realize its a bit of a scattered e-mail... but possibly more to come. And thanks to everyone who checks back here regularly. I know since June 17 there's been like 139 hits throughout the world. That means a lot to me. And is really what motivated me to write again... even if short and jumpy.

Wednesday, May 12, 2010

Anytime Fitness Total Body Challenge

So as you all may remember, my New Year's resolution this year was to put my life back where it was 5 years ago, namely by getting back to my pre-cancer weight. Now I've kept quiet about how all this as gone after this summer's weekly updates resulting in my embarrassment once I just stopped. But I've been doing the Body Challenge, and have in fact crushed my pre-cancer weight. My final weigh in this morning was -48lbs. I went from 217 to 169.

Below is the essay I wrote for the challenge:

A little over four months ago, I don’t think you would have found anyone more resistant to the idea of joining the body challenge than me. Basically I didn’t think I could really commit to it; I was unemployed, studying for the Bar exam, clueless as to whether or not I would be moving out of the area during that time, and just didn’t think I had the physical ability to really be competitive… and I need to be competitive. I was happy just doing my own routine, knocking off a few pounds here and there; why would I ever want to join something I couldn’t really commit to, let alone win?

Then Bill Garvey, the 2009 winner, and my step-dad started getting on me about joining, you know “keeping it in the family.” Then CJ cornered me in the gym. And then finally, my mom turned to me after noticing how much weight I already dropped, and was like, “so at this rate you’ll win the challenge without actually joining.”

I had started back at the gym right after New Years. I realize it’s a bit of a cliché, but everything in my world had sort of gotten flipflopped around and it seemed like good timing. I just graduated law school, moved back home, and was settling into another hectic few months of studying and waiting. But more influential than all of this was that I was coming up on my 5 year cancerversary. I was just 21, a senior in college, when I was first diagnosed with thyroid cancer. Yes, that’s the cancer of the one main organ in your body that controls things like weight and your metabolism. Since then, I’ve had enough yearly surgeries and radiation treatments to systematically destroy any body. Throw in the added stress of four years of law and grad school, and a set of bad knees from my days as a proper athlete, and this spells a recipe for physical disaster. I know I’m a stress eater, and I know that I probably pack on more weight because I’m always a bit strung out. The final blow came last February when I was told I would always have cancer; I would always test positive for it; it would always be there, and I would just need to watch and wait. The weight suddenly packed on with rapid speed.

Then New Year’s came along and I decided that five years of letting cancer effect my life was quite long enough. My resolution wasn’t so much to lose weight, but rather to put my life back where it was five years ago, which just happened to also include taking off the weight. In the end, the timing for the challenge couldn’t have been better. A month into it, I unexpectedly got a clean bill of health; it was like all the weight and stress dealing with my health had been lifted off my shoulders, and for the first time in five years I actually had the energy and stamina to get back into shape.

Initially I used the challenge as stress management while I studied for the Bar; you wouldn’t believe how many people didn’t have the endurance for the exam, and spent the months leading up to it completely strung out on caffeine and junk food. After the Bar, the challenge became a distraction. To make things more interesting I started throwing in totally random lessons for things I’ve always wanted to learn: tennis, golf, aikido, and even a surf conditioning class. All of my normal stress and anxiety got channeled elsewhere. Next thing I knew, I got a job, passed the Bar, and suddenly crushed my pre-cancer diagnosis weight. New Year’s resolution was more or less achieved before May.

I had a few hurdles with the challenge; little things, like I don’t particularply like meat and eggs (I’ve gotten over this), I couldn’t afford to work one on one with a trainer, and with my thyroid meds, I can’t take any stimulants/metabolism boosters/ or proper fat burners. Nothing is more depressing than having one of those days where you’re completely exhausted, you get to the gym, and all your friends are hyper pumped off of stimulants. It all made me push myself just that little bit harder to keep up with everyone else.

My favorite day was the day after the second Mt. Trashmore challenge; that night everything clicked. Bill and I went for a jog outside. Now I suck at running, I’ve never been a runner, I can sprint and jump, but not really run. Bill paced me at an awkwardly slow speed, and I went from only being able to run for about 3 minutes, to an hour-long jog. Like I said, everything just clicked, and I now wake up every morning and jog around my neighborhood watching the sunrise over the ocean; I can’t imagine a better way to start my day.

I can’t really explain how good it feels to have so much going on your life all at once the way things have for me over the last few months. And then to tie it all together by getting back in shape, crushing my goal weights, and pushing myself to do physical activities I didn’t think I would ever do again, is all overwhelming. I can’t believe I ever resisted joining the challenge, and I want to thank everyone who pushed me into it and through it, all the trainers, Bill, and most of all the whole Great Neck team. You’ve all been awesome!

Tuesday, May 4, 2010

Dive for a Cure

I did something awesome this weekend (correction... this is more like a month ago now)... I did "Dive for a Cure"... Now, I know by this point everyone and their mother has some sort of race or marathon to raise money for this that and the other thing... this was soo much cooler. Dive for a Cure is Scuba diving to raise money for cancer research and things. Diver's are a special breed of people. We have more fun I think. For races for cures... there's a race... prizes, maybe some food and beer. When you dive for a cure... there's guys staying underwater for 24 hours... there's relay teams diving for 24 hours, there's a silent auction, karaoke, kegs, a beer pong tournament, cornhole tournament, black jack tournament, a dunk tank, dog training, a date auction, face painting... and the list goes on and on and on.

Seeing as I don't know a whole lot of people here, I decided to go ahead and volunteer for the event. I meandered around, met people, and sat underwater for like two hours watching really hot navy divers wrestle each other underwater. Then the next day, I brought my mom, and took her diving for her very first time. Super ridiculously awesome, and possibly one of the best cancer fundraisers i've ever been to.

Friday, April 30, 2010

Insurance Vent

They've increased my insurance by $150 a month... It now costs me about $750 to be insured... and they don't even pay my meds.

Sigh... the reality is, to get out of my house and be independent I'm going to have to quit the job I like and feel good about, and go sell my soul to the highest bidder w/ benefits. :(

Sunday, April 25, 2010

And a Drum Roll Please...

I PASSED THE BAR!!!! I'm officially a lawyer now.

On a related note, I also picked up a job. I'm now working at a small firm doing loan modifications and stopping foreclosures on homes. Pay sucks and there are no hours, but I couldn't have asked for a better group to work with, learn as much, and still feel good about myself at the end of the day.

My life rocks my socks right now... hope it lasts for a while.

Tuesday, April 20, 2010

Dear Thyroid: Thyeulogy

Way way way back in February when I found out I was cancer free, I wrote a new letter to Dear Thyroid, which I have called my Thyeulogy.

They posted it back at the end of March, but it became one of the million things I never finished my blog post for. So just in case you haven't read it, here's the link: Thyeulogy

Monday, April 12, 2010

Yoga Bear and the Yoga Challenge

Over the past month I've written about half of 5 different blog posts. Many of which were time sensitive and I failed miserably at finishing and publishing them when I needed to. I've been busy running around, having a life, etc. All of which I hope to update you on over the next few posts. But first I'm going to start with yet another time sensitive one.

Today I want to talk to you all about Yoga Bear. YB is a non-profit organization that tries to provide free yoga classes to individuals with cancer. For many of us out there, living healthier lives is a major part of how cancer impacts us. A lot of people find yoga to be a truly soothing stress reliever, and a gentle way to get back into shape.

I am not a diligent yogi. I'm a little too ADD to properly meditate and commune with the world... but I do love yoga. I'm super bendy-flexy, despite my size... though I have zero balance. And on days where I'm particularly tired, or need to get my body moving, but w/o a hardcore workout, I turn to yoga.

YB works to provide a valuable service to we cancer survivors, and at a minimum I would recommend you check out their blog.

Right now... starting today in fact, they are doing a 12 day Yoga Challenge. Each day they post a new yoga move via video and ask that you comment on it. For each day you comment you earn a chance to win a free yoga for breast cancer dvd, and if you comment every day, you win a free pass to Yogapalooza, which is in June, and being held in a handful of major cities throughout the US. Here is a link to day 1 of the challenge... Day 1

I'm doing the challenge because it's something different and I think I would enjoy Yogapalooza, even if I'm not the best yogi.

Yoga Bear was actually one of the very first cancer organizations I joined. While I haven't actually been able to benefit from the free yoga classes yet, I've enjoyed talking to new people, and checking out all the other little things they do!

Tuesday, March 16, 2010


Ok, I can't believe I'm doing this but I am pulling all of my social networking cred to ask everyone out there to spend 1 minute of their time to vote for me for a competition called Host Our Cost.

Vote for me here--> Host Our Coast

The competition is this: spend the summer backpacking the Delmarva Peninsula Blogging about it. You get $15,000 and free room and board, and you have to go out and do all sorts of activities and explore towns and check out the wild life, etc.

I was in fact made for exactly this type of job.

I assume if you are reading this, you're probably a regular, so you most likely know I'm not half bad when it comes to writing. I would also hope that you've perused my blog and found links to my travel blogs over on the left hand side: Hamburgers and Vodka, and Chasing Tigers.

I really do love to travel and blog. If I thought that I could realistically afford my life while doing it, I think I would... (also if I thought my parents wouldn't kill me w/ the whole law school thing).

For the competition, we had to submit minute long videos about why we want to be hosts... plus a sample blog.

From you all, I ask that you click the link and vote for my video... and also, if you happen to have blogs of your own, if you would be willing to post the link there as well.

I'm not a communications or journalism major. I've taught myself how to do html script and video editing, so I'm a bit behind there... and you all are really my major internet social networking group.

It's something I know I can do, and do awesomely. So I really hope you all take a few minutes of your time and vote for me... --->here


PS... if you at least watch the video, you'll get your very first glimpses of me and how incredibly corny and awkward I am in real life... that in and of itself should be motivation to at least go watch the video

Monday, March 8, 2010

My Introduction to Cancer and Relationships

So, I’ve been looking over my posts over the last year or so (can’t believe I’ve been posting for over a year), and I’ve started to notice that I tend to only talk about my immediate reactions to what I’m dealing with at that moment. I am an emo blogger… a part of me just died. Granted, this is sort of the whole purpose of the blog: something to keep me from bottling up everything making me a walking time bomb. But, there’s 4 years worth of cancer life that I lived before I joined the blogosphere. I’ve mentioned a few topics, usually directly concerning what I was doing with my cancer, but never really going too much into the little stories and details that have sort of built up around my cancer world.

I’ve slowly been reading through Everything Changes, and by slowly I mean I get through as many pages as possible before feeling a sudden urge to just ball my eyes out, at which point I have to stop. Books make me cry, more so than any other medium I’ve come across. Anywho, with each new chapter a new memory has gotten triggered. A lot of stuff I just haven’t thought about. A lot of stuff I just didn’t have words for. A lot of stuff that is so mundanely obscure, (ie. The chocolate cake story… yet to be written) that I’m surprised it’s logged itself into my meory at all. (I wonder if this is how people feel reading what I've written) And so I thought, maybe I should actually start writing down some of these stories. The small ones that seem almost meaningless; the large ones that somehow managed to shape my world.

I’ve chosen to start with a larger one. A topic, that surprisingly enough I’ve managed to avoid like the plague throughout writing this blog, despite the fact that in the real world it’s probably one of my most mind consuming issues. I am of course talking about dating and relationships.

I’m guessing w/ the title of this post that seemed a lot less like a big build-up. I really wish you all could hear exactly how these things go on in my head… I think it would be about 95% more amusing that way.

So on with the topic. I’m guessing if you’ve read through my blog, there’s a few things you’ve probably picked up on when it comes to my interpersonal relationships, and my less than shiny happy demeanor towards them… this of course overflows into my dating life, and is then magnified exponentially. I have a hard time trusting people. I don’t like the idea of needing anyone. And I don’t like being a burden. And there hasn’t been a whole lot of supporting evidence in the last 5 years that maybe I’ve been overreacting.

Be prepared, I’m about to tell you about pre-cancer robs. I started dating this boy when I was 18. I’m gonna gloss over a lot of details, and acknowledge there are some dimensions to this relationship that I’m leaving out all together, no point in dissecting everything. I lived in Pittsburgh, he lived in Norfolk, he was a family friend. Nice kid. Um… exceedingly nice kid. And we dated for about 2 ½ years. Then one day (well not really one day, it had been something I had been planning for years, and told him about before hand) I decided to go study abroad. To compound on this, I also got an internship with the State Department in the Marshall Islands. Suddenly we were looking at 7 months apart w/ 1 week in the middle, where I would be home, which happened to fall on my 21st b-day. Needless to say, this didn’t go over so well, and at some point in March, while I was off trekking around Europe, we broke-up, more or less. I don’t think you can just drop something like that, not after 2 ½ years… at least that’s what I thought.

It took over half a year for us to have some final spats, before we weren’t always in each other’s life and start moving on. Two months later I had cancer. Telling people was hard; telling those closest to me harder; telling the person who had been my best friend and center of my universe for the last three years, impossible. I couldn’t do it. He had broken my heart, and I was just getting back to a point where I had moved on and we were friends. I needed to not need him. But, in lot of ways I did need him. I needed to be loved, and held, and have someone else be strong. I needed the person that new me backwards, forwards, inside and out. I hadn’t dealt with anything bad in my life alone in years. Who else in the world would have a better idea how to handle and support me? But I chose not to drag him back into it.

It was my mom that told him in the end. Which makes sense… he was my step-dads fraternity brother (much younger), they were friends, he was practically their adopted son. I got an IM. “I heard you were sick. I’m sorry”

That was the response from my best friend. No, “hey do you need anything.” No phone call to see if I was ok, what was going to happen or anything. No indication that he cared. He met his obligation of acknowledging he heard I was sick. Maybe yeah, we had drifted over the last couple months. And yes, I let a bit of my pride get in the way of automatically turning him when I found out I was sick… but like I said, center of my universe for the last few years. I know for sure if anything had happened to him, and I found out, I probably would have dropped my life and been down there in a heartbeat.

I wasn’t at my computer. We never spoke again.

Not really at least. We see each other at parties. There’s the occasional word or two. I don’t think I have ever felt such wrath towards anyone else in the world.

Like I said earlier, this is a really genuinely nice guy. The drama between us is usually contributed to my doing. I’ve kept my mouth shut. Except for once. Very drunkenly after a party I told one of the other frat-brothers; said the reason I didn’t talk to the kid anymore, not even as friends, was because he wasn’t there for me when I got sick. He had the expected reaction, disgust and disappointment. I briefly felt justified. Someone understood why I was angry.

I've done a lot of wondering what would have happened if I hadn't had cancer. He’s married now, has a kid... and there is a small part of me, until recently, that would scream out, "THATS SUPPOSED TO BE ME AND MY LIFE!" We didn't break up because we didn't love each other, we did it more because we did. And as I was getting ready to graduate, it seemed pretty reasonable that I could move home, and our situation could change to a point where we could actually be together. But then I got cancer.

Mom and I talked about it a couple weeks ago. The subject of my lack of dating comes up a lot these days. And she just said that he wouldn’t of been able to handle it. If we had stayed together, me having cancer would have destroyed him.

Why do other people get sort of a pass for not being able to handle cancer? I wish I could get a pass. “Cancer would destroy Robin. She should just not have to deal with it.” I wanna opt out of a relationship w/ my cancer self.

I’m not really angry any more. That was part of the strange part of writing this post. Trying to portray how I really felt when things were going on. A lot has happened. I don't even think that's really the life I wanted anymore. Even then I questioned the whole settling down so young life. And I look at him now, and its like looking at an acquaintance; he knows nothing about me, doesn't have a clue about how cancer has changed me. I wonder if he looks at me now and thinks I'm the same person. As for me, I vaguely remember this one time in my life, where for a couple of years I wasn’t alone. And that’s about it memory wise.

And that was my crash course introduction to relationships and cancer.

Thursday, March 4, 2010

The Price of Staying on Top of my Health


I'm not going to get into a debate on the cost of health care here. I'm just going to make some very basic statements of fact about that number you are looking at up there. I am lucky; I pay an arm and a leg every month, and the occasional promise of a first born child to keep me insured. One month of health coverage costs more than one month of my last rent. And being that I'm lucky, that number up there got knocked down to $113.85.

Now what is this number for? Is it for a doctors visit... no. It's for the basic blood work I am supposed to do every 6 months for the rest of my life to stay on top of my health. Now I admit, I added on two things I wanted checked. Why? Because I'm an informed thyroid cancer patient, and I know that there are certain thins docs don't regularly look at, but if they are off can really screw with you. First, I asked for a Free T-3... $184... I know that the T-3 debate rages on from health professionals to patients alike. I was just curious. And there has been enough talk about it that I figured I should get it tested, and if it was really low, then I could really make a decision about a t-3 supplement. The second, and probably more normal thing I asked to have tested was my Vitamin D. I mean... its winter... thyca people tend to have Vitamin D issues. I was a little itty bitty bit lower than my doctor wanted me the last time.... $221. Oh and my doc threw in a CBC just to make sure my white blood cells were ok.

So all these "extra" tests that we get told we should do, and that we do just to stay on top of things... well they sort of like to rape our wallets. Even the reduced $113 still hits hard when you know you're doing that at least twice a year. I may have to make my testing decisions based on costs for now on. There's a part of me that just died while making that statement.

Monday, March 1, 2010

Death by Lettuce Beginnings

Another quite ancient post that I found deep in the recesses of my hard drive. This is from August/Septemberish 2007 I think. A lot of this is probably gonna sound pretty familiar, particularly the last paragraph. But really, I wrote it all a year before I even thought of starting this blog. This was actually meant to be the start of my book that never quite panned out...

As I stood in the Ballroom of the Student Union, I looked across the faces of the 230 plus people who had decided to attend the conference. After three years I still managed to be the youngest person in the crowd. It was about three years ago this November or October… funny, I don’t really remember the exact date… that I was getting my yearly check up and my doctor felt my neck, turned to me and said, “You know you have an enlarged thyroid, right?” This single phrase has more or less turned my world upside down and inside out. That lump turned out to be thyroid cancer. I was only 21; a senior in college. Dreams of joining Ameri-corps for a year followed up with law school in D.C. It’s surprising how fast things can change; but I’m getting ahead of myself.

I almost wanted to start this next paragraph with, “The fact is someone should have figured this out earlier.” But I’m aiming not to put blame on any person because that’s really just silly, and there isn’t any clear evidence that the thyroid cancer had anything to do with other issues I was having. But there were some indications something was wrong... I first gained 30 pounds during the second semester of my senior year of high school, odd mainly because I was an athlete. I gained another 30 pounds over three months during my sophomore year of college. The following summer, unable to really drop the weight and being fairly frustrated by it I had blood tests run. Everything came back normal. That was August, and like I said the lump was discovered around October/November.

I don’t think people like to have me at support group meetings, or in cancer survival conferences. Its not that I’m not likeable, it’s more that I’m young, and they expect me to say something positive. But instead I tend to turn out to be an embodiment of everyone’s worst nightmares. Granted I fully recognize compared to many other cases I’m living a blessed life. I am lucky that it hasn’t spread to my lungs and bones. I am lucky I am young enough to bounce back from radiation fairly quickly. I am lucky because I am more or less positive that I’m not going to die of cancer at any point in the near future.

Next Friday I’m getting another ultrasound of my neck. It hasn’t even been 6 months since the last one. In all honesty it is the one part of this that scares me the most. At least the FNA (fine needle aspiration) is. The first time, they had me facing the screen and I watched in horror as the needle moved back and forth in my neck, and the doctors remarked how it was the biggest that they had ever seen. Last January I went in for one because I had felt a new lump in my neck. While it turned out to be nothing, sitting in that waiting room for the first real time, I lost my faith in God. It wasn’t that I was scared, which I was, to the point where I was doing nothing but praying in the waiting room. But I looked over at a family at a table. There was a young girl there who clearly had severe Down syndrome. But even worse than that was that she also clearly was there to get another round of chemo therapy. And the family looked tired and unnaturally old, and the girl looked innocent and ignorant of what she was going through.

Originally, Death by Lettuce was going to be a book; one of those inspirational tales told by a cancer survivor which instills hope in every other person with thyroid cancer. Its spine would be pink and the title would be in a hand written font. There would be a cartoon lettuce with sharp pointy teeth about to eat a little curly haired cartoon character of myself. It would be something Oprah would pick up, and I would go on her show and become a model poster child for thyroid cancer awareness. But books about survival tend to have a message, special survival tips, great words of wisdom and lessons learned, or at least some sort of happy ending. I’m afraid my book would end up reading more like a Steinbeck novel.

Friday, February 26, 2010

Random Thyca Tip #1


After radiation when my taste buds went psycho, and I was convinced I would never taste food again... I could still taste bacon. I survived off of BLT's

Monday, February 22, 2010

Locks of Love

Ok, so talk about my inability to follow through on something.

That picture you are looking at up there, that's my hair. My long, gorgeous straight hair. In case you didn't already know, I have an overwhelming love hate relationship w/ my hair. Naturally, it is a fluffy curly mass. Its super thick, and super annoying. When it looks good, its my best feature. When its unhappy with me... well... yeah.

A couple of years ago I chemically straightened it. Best thing ever. Loved it. Got back to the states, price is 4x as much here, and they didn't do it as well. After two years, I've decided I can't afford to keep straitening my hair, and just need to let it go back to being a wild beast. This is not an easy task, and requires uber amounts of patience.

One major step towards this end, was cutting it all off. I had been planning the big cut for about 5 months. I measured my hair regularly. Tried to imagine what I would look like with short hair. Contemplated whether or not I could handle the regrowth of curly hair without the weight of the long hair pulling it down.

The only thing I didn't debate about was donating it. Mom thought I was going to chicken out and just get a few inches off. I stuck to my guns, off came the 10 inches. *on a side note, I balled my eyes out for weeks getting used to the fact a lopped off all of my hair... which might explain why the ponytail has been sitting in a drawer now for over a year. So I figured I would make the post, and say my final goodbye, and hope there is a child out there that will love my hair even more than I do.

I think Locks of Love is one of my favorite organizations. I'm a big softy when it comes to kids. And I know the value hair has with a persons identity. And its something I could do without paying an arm and a leg. I always thought it was just for cancer kids, but most of them lost their hair due to alopecia areata, which tends to be a little more permanent than chemo hair loss.

There are so many organizations that raise money and are so focused on fund-raising, that they don't seem to realize the people they tend to ask for money from, or that would be most willing to donate, are those of us who probably need it, or have too many other expenses.

A random tidbit you might not know. If you have shorter hair, or there is shorter hair in your pony tail, or even if you have grey hair, you can still donate it. LoL actually sells that hair to pay for the manufacturing of wigs. The only thing they can't use is bleached hair b/c it reacts badly w/ certain chemicals. But even my chemically straightened hair, or dyed hair can still be used.

So if you are looking for a way to contribute, and money is tight, take a look in the mirror and see if its time for a new hair cut.

On a totally different random freak out note... I take the bar tomorrow.

Tuesday, February 16, 2010

5 Year Cancerversary

Today is my 5 year cancerversary.

I can't believe I'm only 26, but have already had cancer for 5 years.

February 16 also tends to be my least favorite day of the year... in fact over the past few years February in general has just been sort of a shit month. With lowered expectations for the month of February, I don't think you can imagine exactly how overwhelming the awesomeness of this February has been.

But that's not what I want to talk about in this post.

5 is a nice number. Sort of a mile point on how we measure our lives... looking back in 5 year increments. So this is 5 years in review... more for my benefit than anything else... because sometimes you need to know what you've accomplished, even with cancer... and these are totally arbitrary things that stick out in my mind... remember, I'm a travel junkie so that tends to stick out in my mind most as an accomplishment.

Feb. 16, 2005: Got into my first law school, told my results were "suspicious" and had the first of many multiple hour conversations with a boy I didn't really date for over a year (a story for another post).

year 1: Graduated from college, went to mexico a week or so after radiation, climbed a pyramid (dumb idea) went night diving (dumber idea, was stung by sea urchin, abandoned by dive body, attacked by little orange fish and floated in darkness for 20 minutes while the boat tried to find me). Worked w/ handicapped kids over the summer, moved in to my first apartment on my own, Started lawschool, started a law school volleyball team...

Year 2: jumped out of an airplane, (I don't remember this summer), Started grad school, ran a public interest auction, worked at a non-profit immigration firm... helped refugees and family's get in, and got a boy medical care.

year 3: backpacked vietnam, laos, thailand, malaysia, singapore; worked in cambodia, started a space law moot court, help set up a mediation organization as vice president, treasurer, international law society, worked as a district attorney

Year 4: worked in hamburg, germany... backpacked: france, germany, sweden, denmark, poland, russia, luxembourg, Did an international moot court in Canada, organized mediation training for lawyers; started blogging

Year 5: Started and won a mediation competition, graduated from both law and grad school. Won community service award, and Order of Barristers, took a 1912 mile road trip zigzagging through VA and PA, Saw amish country, hit up 2 ren fairs, trip to New York City; asked to guest blog on various sites, developed and taught street health and human rights course to at risk youth, teaching handi-capped swim lessons, peace corps nomination and of course, clean bill of health.

Not too bad from my perspective. Not exactly what I think most normal mid-20 year olds tend to do, but normal was never exactly my thing.

So here I am 5 years later and there's a few things I've noticed lately, the main one being that I seem to be doing all things possible to regain who I was 5 years ago. I sort of want to put myself back where I was when I was 21. I'm back to wanting to go save the world. I'm working to be back at my pre-cancer weight. Recently cut off what was left of my straight hair, so i'm back to having a super curly afro. I realize how superficial that might all sound, but its a big deal. I'm not fighting how cancer has changed my life, I'm just back to being settled in a way, and looking to picking things back up where I feel like I left off... though if it starts to sound like I'm drinking and partying as much as I did at 20/21, someone should probably step in.

And that's where I am here on this 5 year cancerversary.

Thursday, February 11, 2010

Holy Crap, I'm a Survivor!

Blood work results are in. My meds are a tad too high, but everything else is undetectable.

Combine that with nothing showed up on the ultrasound...

In other words, its official.

Just 5 days shy of my 5 year cancerversary...

I am cancer free!

Wednesday, February 10, 2010

Cancer v. Nanobubbles

So I'm a big sci-fi dork, and find the idea of nanobots battling cancer full of cheesy sci-fi movie potential, while also being awesome. I do realize the article says nothing about nanobots, but rather nano particles... but for sci-fi purposes, it would be nanobots... But still, nanoparticles and lasers sound like something from a book. Particularly interesting is how they can target specific individual cells and can make them larger, and has been used in head and neck. I don't know about you, but for someone that deals w/ thyca, this could be huge. I mean, think about it... instead of using I-131 to eradicate leftover cells after surgery, using these little buggers instead? An end to potentially positive tests but where things are too small to biops to be sure. Maybe I'm jumping the gun a little bit here, but there seems to be sooooo much potential. Interested to see where it goes next

Nanobubbles: A New Weapon in the Fight Against Cancer?

Monday, February 8, 2010

The Verdict on a New Doctor

Things that are helpful... actually writing a post before I publish it...

So, after weeks of anxiety, mental exercises, and kicking myself for not going to the doctor sooner, the day of the appointment came and went. I was planning on posting something about my anxiousness before now... but by the time to do it came around I had so much going through my head I frankly didn't care about the endocrinologist any more (after 5 years, I have finally learned how to spell endocrinologist). And things couldn't have gone much better than they did.

I went into this appointment, not really praying for some good, or even using positive thinking... it was more the mentality of this has to go well, there is no other option. Rather than spend the day studying beforehand, I spent my day trekking up and down virginia beach and norfolk hunting down eye doctors and dentists and others to fill out my peace corps paperwork. I figured, why not do multiple things that bring me stress and anxiety all at the same time, and just get it over with. It helped. I was pretty pumped by the time I had to go in.

I got there 45 minutes early... as one of the local high schools was letting out, passed the building, and went to turn around on this back road where apparently all the high schoolers park. You ever want to feel real fear when you are driving, drive down a small road of a parallel parked teenagers trying to get out of school. By sheer luck, the end of this road actually went into the building I needed to go to, so I didn't have to attempt to turn around. As I pulled up there was a very angry man standing in the parking lot, pointing me back to the road. Yelling out, "this isn't a road, this is private property can't you kids read the sign." I had just been mistaken for a highschooler. My shocked response was, "I'm not a highschooler"... his response back, "It doesn't matter this still isn't a road."... "But I'm a patient"... "Oh... these people just cut through here all the time real fast, its dangerous"... He didn't apologize, but I think the sheer embarrassment of yelling at a patient trying to park was enough.

First impressions of the office: I hit the restroom before I went in. It was trendy. After the sterile environment of UPMC... being somewhere trendy was amusing. The walls were done in shimmery tiles, and the sink was a bowl sink... where there's a bowl... that has a drain in it... like i said trendy. I couldn't help but acknowledge this appointment may in fact cost more than I realized. I also picked a doctor in the wealthier part of Va beach, which may have hit on the trendiness. The waiting room was a fantastic deep turquois, and again, shimmery tiles. Probably the most calming waiting room ever.

The doctor: Mellow. Probably in his 40's/50's. As is per usual, he hadn't read through my file earlier. But we sat through it together. He was impressed with my care up till now, and agreed with everything done. Chastised me a little for not coming in sooner, and apologized for the wait. Then to kick off the actual exam, he took me back and ultra sounded my neck right there in the office. No waiting, no prep time, no radiology technician or student. Just him. Honestly, I wasn't mentally prepared to do an ultrasound right off the bat. It really is my least favorite thing to do, and I panic a bit. But he went hrough, and as he finished a section told me what he saw, and when my head was towards the machine, watching him measure nodes, he pointed out that it was benign and the middle bit I saw was just some fatty deposit. And then he cleaned me up like a baby, and told me everything looked clear, even my thyroid bed, which is what they had concerns about a year ago.

The plan: So we developed a new plan of action, pending blood work. Basically, he pointed out that the last round of radiation was based on a slightly elevated Tg level, and something that showed up on a pet/ct, but not on a RAI scan. So technically, they never really confirmed there was in fact cancer there. And now he didn't see anything on the ultra sound, so pending the blood work, things there's a possibility that I could have been cancer free for a while now, or at least everything slowly disappearing. He pointed out that the Tg could have just been some lingering thyroid cells, that weren't actually cancerous, but w/o biopsy no one would ever know. He still agreed w/ the course of treatment I was given b/c of how unusually aggressive my thyca was (he even broke that down to say i'm probably in a bout a 5-10% group w/ papillary thyca that aggressive). But he doesn't think a thyrogen stimulated round of blood work would be particularly helpful now, and maybe my body's been run through the gambit enough over the last 5 years. Needless to say, i'm cautiously happy about his opinion.

Blood Work: Our only point of contention was here, and it was only minor. I asked him if he tested free T3, and he said not normally, and asked me if I wanted it tested. I told him I did, and he let me know it wouldn't change his course of treatment, but he was willing to do it. This is also the point that actually impressed me. He asked if I've ever had a CBC work up, which I haven't, and he was like, "I want to run this because of how much radiation you've had." Shock and Awe! He wants to follow-up to make sure the radiation hasn't damaged my blood. I also told him to throw in my vitamin D levels for good measure.

Follow-up and the peace corps: I told him about the peace corps and gave him the paper work at the start of the visit and he never blinked an eye... except to ask me w/ my education if I would be getting a bit higher of a position. When talking about when my next visit would be, we planned for 6 months, so he could see me before I shipped out. It was like it never even occurred to him that the whole cancer thing might be an issue, and be part of the reason that I was sort of twitchy and anxious during the whole visit. So finally, I asked, do you think this should be an issue? And he just looked at me, sort of surprised, and was like, "no, why should it? Get blood work done once or twice a year. Do you have a plan for getting it done already? Both morocco and jordan have decent medical facilities that should be able to look at your TSH, T4 and Tg... be great if i could see you once a year, and there's always Dubai." My response was, "you should write that down on the paperwork... the peace corps needs to send me to Dubai once or twice a year for blood work." And that was that. A doctor told me that I should be fine, and even though he didn't really know me, it sounded like I would do well.

And that was it. 2 hours of my life w/ a new doctor, and the rules of the game have suddenly changed, and things are looking better than they have in a long time.

And a final story, while the nurse was taking my blood pressure, she was reading my wristbands, and was, like, "stupid what?"... "stupid cancer"... she looked a little closer at the wrist band, saw it was flipping her off, and just started cracking up.

So this is my "Fuck you cancer, you can kiss my ass, I'm getting my life back," moment.

Monday, February 1, 2010

How do you move forward in life, if you can quite seem to move on from cancer?

This is actually a post I wrote back in June. Though a little out of date, a lot of bits are still relevant, and I figured I should just go ahead and publish it for all to see.

By now, you should have gotten the point that things for me are sort of in a rapid state of stagnation. I've finished with school, I've moved from Pittsburgh, I'm supposedly looking on to bigger and brighter things. Rapid amounts of change, with certain constants. I still have cancer. I still need to block out time in my life to deal with cancer. I'm not even technically in remission, so I still need to be on high alert if I can feel anything change. In the ideal world, my last round of radiation would have obliterated whatever cancer cells I had left. I would be on a set schedule of six month-year check-ups, w/out extra testing or scans, or uncertainty. The drama tagged along with actively still having cancer would be done. And that would be how I wrap up one chapter of my life, in a nice little package, so I can start fresh, with the next chapter. Only minor strings and hassles attached.

If only the world functioned that way.

Am idolizing that sort of situation a little too much? Can cancer survivors really move on with their lives w/out it plaguing them? I almost feel like, and especially for young people, cancer just stays with you. I'm a bad person to judge on this. I've had too many false hopes, and too many recurrences. I think it would take me at least 2 years before I would accept a clean bill of health. And even then, and I know this from the 1 year of "clean" health I had, I wouldn't know quite who I was without the cancer label; how I should react, trying to figure out what really is and isn't worth worrying or caring about.

I think thyroid cancer has its own special ways of reminding us we will never be better, or who we were before. You lose an organ. A whole one, right off the bat. You will be taking a pill every day for the rest of your life. And for young adults, the rest of your life is a pretty long time.

Which leads me to the question... is it different for older people? People who have solid lives; who aren't necessarily at a point of massive change? People with jobs, and families, and homes?

Thursday, January 28, 2010

And suddenly there was conversation

Sorry for the bombardment of posts... really, I had decided to pre-write a post a week until at least after the Bar was over so I didn't spend so much time doing it... only to start randomly have things happen, so now I've got like 6 weeks of pre written posts lined up, and still keep throwing things in the middle.

But, yet another extraordinary thing has happened thanks to the Peace Corps nomination. My friends are actually talking to me about my cancer situation.

I'm floored.

Its such a taboo issue, and had settled so far back into people's minds, that every time I tell them about the nomination, but warn I still have to pass the medical, its sort of like a reality smack. For most people its the first time I've told them that the docs told me I would probably always have cancer. For others, its explaining the risks, and talking about why its even an issue. As far as they can see, I'm fine.

I told my best friend the other day that I would not be getting radiation again... ever. She bout damn near flipped. Her sister, a couple years after me was diagnosed w/ Hodgkins... I can't imagine how she must feel. But I explained to her the new thyca guidelines. How 5-600 mCi accumulated in a life time significantly increases the risk of secondary cancers, and I've already had over 500. I told her about how I'm not going to do biopsies on things that are smaller than a centimeter anymore, and how I would need good reason to cut back into my neck for a third time considering how much scar tissue is already built up. It was a conversation I hadn't even really had with myself, but it all just spilled out. I am tired of aggressively fighting my cancer, and its time to take a step back and reevaluate things.

Further, things have caused me to think a lot about whether I realistically could do the Peace Corps. I understand entirely why they wouldn't want cancer patients. But, my meds are level, I'm getting into great shape. Overall, I'm pretty healthy. I'm not going to die or have ridiculous symptoms that would need me sent to a hospital. I would be fine just getting some blood work once a year to keep in check. I am a fully functional human being. I'm surprisingly confident about all that.

So what is it that makes me a bit of a neurotic cancer patient? I think its the little things that go along with cancer. Its being jobless, and going over the what-ifs. Its the loss of independence, and the constant reminder of everything I've done. I'm angry and I'm frustrated that this stupid little thing could have any impact on my life. And I'm worried, and justifiably so, that it will continue to do so. I'm not afraid of cancer, or it coming back, I'm afraid of how that might effect the life I've built. And I'm afraid of building that life in case I lose it again.

Tuesday, January 26, 2010

Twighlight Zone: A positive experience navigating the health world....

So, with the Peace Corps nomination comes the absolutely terrifying part... the medical evaluation.

Today, I got to see everything I need done, not actually a bad list, and probably a lot of stuff people should have done every once in a while anyways. Yes it means a few extra doctor appointments and a few more needles than usual, but, and I think for the first time ever, I'm sort of excited to do it. I'm not usually big on positive thinking, but in this case, I can't seem to conceive of not getting to do this. And while I'm wary of things that are too perfect, I really want this.

So I decided to start with something easy: hunting down my immunization records. Most normal people probably have these somewhere in a file folder. But due to the fact that I'm a travel junkie, I've probably had about 50 million times more immunizations than the normal person. The last time I think I got like 6 different ones. And they all got written down on this little card that was to stay with my passport. This little card did not survive the border check, I believe into Cambodia. I find this pretty amusing on some levels... So, the options are lie about what I've been immunized for and on what dates(b/c I don't really remember), get all the vaccines again ($), or go through the epic battle of fumbling through medical record offices, slicing through red tape, and hoping that they even keep this info on file. Oh, and I couldn't even remember where I got this done at. Amazingly, the hardest part of all this was messaging a friend and saying, "what is the place next to Arby's in Oakland where you get immunizations done?" County Health Department. I only had a main phone number; I prepared for the epic wait and phone maze. With in seconds of dialing and explaining I got an, "Sure, let me transfer you to the clinic."... Where the woman was like, just fax me a letter that says I can release your info to you. No form or anything. The whole thing took all of 5 minutes. I was in shock.

I then proceeded to call up my insurance company to see what they would cover, again prepared to be sitting on the phone with horribly unhelpful people. After arguing with the machine over whether I was saying "Y" or "9" for my id number, I was definitely mentally prepared to take on the customer rep. I explained what I needed done, gave her a list of the tests, and she was like, "yeah, they should all be billed as routine services and covered 100% through a participating provider." ... "let me just go ahead and pull up the list to double check for you."... "did you have a doctor in mind, I can check that for you too."... OMG she didn't send me to the internet to look up my own provider.

This whole experience has put me in a state of total shock. Enough so, that I thought I should share it with you all, since I'm sure most of you out there are like me, and used to the angry frustrating experiences of dealing w/ insurance and medical reps.

Saturday, January 23, 2010

Doing what makes you happy.

Today was a great day.

I got to do the Hokey Pokey... not the dirty kind. Shame on you. Actually, every Saturday I get to do the Hokey Pokey. I've started teaching swim lessons with handicapped kids again. Its been a long time. It's taken me 3 weeks to become a person again. Going from lawyer to kid person takes a giant leap. The last time I worked w/ the kids is right after my first surgery, the summer before going to law school. At that point, cancer was just a random speed bump that meant I was going right to law school. I was still more or less me, a lot less bitter, a lot less stand offish, and really good with kids. It feels really good to be at ease with kids again. It feels really good to volunteer.

It is what makes me happy.

One thing I've always had a problem w/ with my cancer is that I already had great big plans about going and saving the world. I didn't need a life altering illness to make me see how precious and awesome life is and how I feel like I have a responsibility to help people. Actually, its been one of my biggest anger points. I've been trying to do good things and cancer keeps getting in the way.

But today... I got a Peace Corps nomination. Not just that, but its to my number 1 region I want to go to. I still have to pass the medical and what not. But the program leaves in September, and I need to do some hard core language training before that. Its going to either be in Morocco or Jordan. 2 years. I'll have to learn French and Arabic. I do that well, and I'm looking at incredible qualifications. Its doing community development work, with a focus on at risk youth development. Something I've already done.

I know there's still a good chance I will fail the medical. I know this. But for the first time, in a very very very long time, I feel like I'm going to get to live the life I want. I'm going to do something that makes me feel good; I'm going to do something that makes me feel happy. I'm going to do something that I'm good at.

For the first time, in a very very very very very very very long time, I have hope.

Tuesday, January 19, 2010

robs v. Hippa

As my first doctor's appointment with the local endo looms in the near future, I have taken on the daunting task of trying to get my medical records sent to him. I had originally asked for my records back when I was leaving, and trying to be helpful, the woman told me not to worry about it, sign a Hippa now, then just call and let them know where and to who they needed to be released to and they would take care of the rest.

Helpful people should be shot some days.

Needless to say, that stupid, time consuming little piece of paper has gotten lost in the ether, and I'm now scrambling around to print up some from the internet and get them up to Pittsburgh, and processed, in enough time for them to sit with my Bible thick file folder and a fax machine to get it to my new doctor. Who will, inevitably not actually read them, until I throw down with the 20 questions, and he realizes I'm not actually just there for a check-up, and do in fact have things that need done.

This is my healthcare reform plan. Or at least part of it. Its called, a universal records system, where any doctor can type in your name, and whalla, there's your medical records. All of them. Patients should be able to access their own records as well. And for those crazy paranoid people who brought about the death of millions of trees via hippa forms, they can always opt out of the program, and deal with signing forms and transferring documents on their own damn time. Or hell, it could just be an opt in program for all I care. But it should be a mandatory system on all doctor computers. With 2-3 backup systems.

OMG, are you talking about non-competative medical software? How will the companies make money? Screw em. Does Congress have the power to regulate this? eh... off the top of my head I'm going to go with yes, under the commerce clause, and something with public welfare, and just for good measure, I'm gonna say that its a restriction on the movement of people not to have it.

On the extreme and shallow side, look at Heath Ledger... multi-doctors, multi-perscriptions, bad interactions... dead... If they'd have known or seen what he was on, possibly not dead. Maybe this should be patient responsibility to tell our doctors everything... yeah, I guess. But we are human, and that doesn't always occur to us. A thyroid example... who out there would link foot pain to being hypothyroid? I mean really. Plantar faciitis... thyroid meds must be off. I went through a year and a half of cortizone shots in my foot only to find out later it was probably my meds. Nor do I have the brain capacity to tell you all the details of my case. I know this makes me an awful cancer patient. And being in the process of moving, all of my records are packed in a box. They weren't supposed to be, but that's where the ended up.

Also, it would be great for my last doctor's plan to just get passed on to the new doctor, without me having to try to explain everything. This may even involve a phone call and interaction between doctors... but at least then I don't look like the know it all patient telling the doctor what he needs to do the first day (yes, I have a list, no I don't have a clue how to be that upfront with a doctor).

Why wouldn't you want your doctors to know everything that is wrong? All your medications? All of your history? What shady business are you hiding? For a lawyer that's really big on human rights, I find that the right to privacy tends to be excessive. I just have this, if you aren't doing anything bad, then what do you have to hide mentality.

Yes, there would need to be safety precautions set up. I'm not a software engineer, I'm just someone who sees a way of saving some cash and making life easier for we sick people. Even if it was just electronic versions of Hippa... with a digital signature pad that you could sign in the doctor's office or something to allow your record's release.

I imagine a world with easy access for doctors to my medical records. Not my family, not my job, not the insurance company. My doctors.

Sigh... too much to really ask for I guess.

Monday, January 18, 2010

Noteworthy: Navigating Cancer

At the beginning of the summer I talked about how I wanted to do review posts about cancer resources and things... and then I just sort of let it drop off. Hypothetically, I'm going to pick back up on that. I also hope that you guys check out some of the links on the left hand side of the page, be it the blogs, the banners, or the websites. Doing everything may in fact be overkill, and I'm starting to notice some repetition on who I'm connecting with, but each place seems to hold something a little bit different, so if one site isn't what you are looking for, maybe one of the other sites is.

Today I want to talk about Navigating Cancer. This is new. Just really got off the ground this January, and all I can say is I wash this were around 5 years ago.

I think this is a fantastic site if you are just getting going with cancer and cancer treatment. There's a lot of traditional networking bits, and suggested blog topics and things like that. But what I like most about it is its uses as an organizational tool, and a way to talk to friends and family.

There are daily monitoring applications where you can say how you are feeling. Records sections to keep record your medical records, and print them out whenever you need them. There's a calendar that lets you schedule appointments and events, and let your people know when things are going on.

For me, I am piss poor at trying to tell people how I'm doing and dealing with cancer. Not you people, obviously, but my people. For,what seem to be obvious reasons to me, I don't give out my blog to my friends and family. Its the only place I feel safe that I can be critical of them. And, I get to vent and yell irrationally without worrying about their feelings.

And then, I'm never sure what is important, what to say, or anything. I think there is even an application here that says what you need right now. This would have been fantastic for me. This is a passive worried about being a burden cancer patient's dream tool. I'm going to passively tell you what I need and leave it to one of you to step up and do it.

Even now, as morbid as it sounds, I'm slowly working on filling out all the discussion sections, for other people, who are just starting out their cancer journey, and putting together other bits and pieces, so that, knock on wood, anything else goes wrong, I can automatically direct my friends and family to the site.

There's still little twicks and tweeks that need to be worked out, but so far it looks like it is running smoothly. Probably the biggest problem it might have is that there don't seem to be a lot of people on it yet to be good resources, and have good discussions. But like I said, I don't think this is necessarily the strongest feature on the site.

So give it a check out, Navigating Cancer

Wednesday, January 13, 2010

New Years Resolutions

So, now that we are midwayish through January, I figured I'd post a bit about my New Years resolutions. I've never been particularly big on these things, but I've had one this year that is remarkably different than the traditional ones we think of and it sort of directly relates to a side effect of my thyca... I think. I also thought that maybe if I wrote them down and shared them it just might increase my level of accountability.

The first is more of a goal than a resolution: I want to earn at least 175 on the MBE and score at least an 8 on all of my essays. This is of course referring to Bar exam scores. These are fairly lofty numbers, but I really believe if I buckle down and learn the material I can do it.

Second, and more traditionally, I want to lose weight. You may recall that I started working with a trainer, and was keeping up a fitness log on here each week at the beginning of the summer. With the car accident, bar exam, freak welts, and the emotional downturn that accompanied all that, the gym got pushed to the side. But, after Thanksgiving, I started going and running and lifting most days; post New Years, it became far more regular, and I've jumped back into dieting. I'm doing more than I was before, but I think its working out. My realistic goal is to drop to 185, that's were I was when I found out I was sick. I also think I'm going to join my gym's fitness challenge. Its sort of like the biggest looser. Last year my step-dad won it, dropping 62 lbs. between January and May. While I don't expect similar results, I think the challenge would motivate me a bit more... which leads me to the last big resolution:

I want to increase my level of commitment and follow-through.

I realize that sounds a bit vague, but it really is becoming a problem for me. I keep saying I want to do something, and never do. I start projects, that I never finish. I can't seem to stomach the idea of committing to anything. I'm like the Babe Ruth of doing things. I do more than anyone else I know personally, but at the same time I start and never follow-through with more things than any one I know, which makes me sort of unreliable and flighty.

I don't know when it all started, but I don't really remember being like this before getting sick. There's a certain amount of "why bother?" mentality that I've picked up. I've gained strength in some areas of life, especially for trying new things, but lost the self-confidence needed to commit or do anything successfully. I'm not sure if that makes sense to anyone.

There are a lot of little things. Blogging is a good place to start. I said I would blog at least once a week... that has gone... meh... and then if you look back at the number of posts I've started but never finished, you would probably be shocked. Ideas get away from me, or I totally lose interest, or it's so important an idea that I don't want to fuck it up, so I think I'll always come back to it. What I'm even worse at is writing stuff for other people and web sites. It's like I try so hard to get my ideas perfect, and then I just sort of give up. And then I flake out on the job. This actually spilled over into a research project I was doing. Interesting topic, but it was a lot of work for zero money. And I just flaked. I fucked it up, a potential job, something to go on my resume, and I did so much work on it, and just never finished or responded to the last e-mail from my boss. I have no idea whats wrong with me. That's just stupid. Its like busting your ass to build a bridge and blowing it to all hell.

The lack of follow-through can be seen in my inability to make phone calls, return phone calls, schedule doctor's appointments, and even studying. A lot of times I just flat out forget.

Lack of follow-through then ties right in with a lack of commitment. I am a commitment phobe. Ironic for someone who seems to always over commit themselves. Earlier, I was afraid to really apply for jobs just in case I failed the Bar and needed to study again. The fitness challenge; the only reason I haven't signed up is that I'm afraid to commit to something until May. That's a long time to commit to something when my whole world could easily change by then. Too many "what ifs".... What if I get a job somewhere else, what if there's another freak accident, what if the cancer comes back? Because lets face it, Feb-may, not a good time for me to start new things. That's when I do check-ups and testing. That's usually when a bad diagnosis comes in. How can I ask for jobs that start in March if I can be fairly certain that I'll need to be doing thryogen injections and probably an MRI or something along those lines during that time?

Is that normal? For those of you out there also playing the limbo cancer game, do you try to plan out your life on the bad things that might happen, just in case?


Oh, and finally, I resolve to get a job and move out of my parents house this year.

Thursday, January 7, 2010

A Guide on how to Support someone with Cancer

Sort of repeatedly over the past few weeks the topic has come up time and again about how my friends and family support me. Its never been straight out asked, but usually plays in to whatever I'm writing about, and its caused me to take a serious look at how I interact with my friends and family on the cancer issue, and even more revealing, how I handle when friends or family tells me they have cancer. I've also been trying very hard to start seeing things from other people's perspectives, like my mom, who tends to see all the people in her life getting sick as being something that is done to her.

I've always been very careful about how I tell my friends about what's going on. Its awkward. "Hey, so it looks like I have cancer."... "Uh, so it looks like the cancer is back"... "Another round of surgery and radiation, wooo!"... "So yeah, by the way, remember that cancer thing... turns out I"m probably gonna have it for the rest of my life." or god forbid I try to talk about how I'm feeling... "So, I sort of hate my life right now."... Cancer rather sucks"... "I feel like total shit"... I mean how do you react to that? ... "Uh, I'm sorry, don't worry, I'm sure it will be ok and work itself out in the end."

Whallah, there, you've been a caring and supportive friend; there in someone's time of need.... yeah right. Congratulations, you just deferred to the most classic packaged responses known to man. I don't care how genuine you are when you say it, the fact is you are probably talking to someone who has heard it 50 million times, rather than purely upset, they are probably angry, tried, frustrated, and want to yell at the world. Those words, actually make me feel worse. As far as I'm concerned they indicate just how absolutely alone in this I am. You clearly don't get what I'm going through, and there's no indication there you want to learn about it. You're probably even thinking in the back of your mind about how melodramatic I am making huge deals out of nothing... whether that's true or not... I don't know... but its what I think.

And whats worse is that you've made yourself feel better. The fact is friends and family being sick sort of reminds us of just how mortal we are, and how unpredictable life can be. A little self reassurance that everything will be ok seems like its more of our own defense mechanism to keep out the "what if" thoughts. And its what you think the other person wants to hear.

I am guilty of all of these things. Even as a cancer patient myself, I find over and again falling into the same pattern of support. But not so much recently. I've started not giving reassurance as much as seeing where I can help, offering up websites, and an ear if someone needs it.

So after some thought, here it is... my guide and suggestions to supporting someone w/ cancer:

1a. LISTEN!!
This is easily the number one thing people don't do. But if you know your friend well, sometimes just listening to not just what they are saying, but how they are saying it can tell you what your supportive response should be. Am I telling you bad news because I need to let everyone know, or are you one of the first few people I'm turning to because I need you to know now? Am I venting, or am I genuinely trying to figure out how to fix my life. Am I upset, but could be cheered up, or am I really depressed?

If you have any developed social skills, reading through those you can probably see the differences in the emotion behind them. And at the same time you can probably see how many people would just shovel out the generic "It'll be ok" for every single time.

1b. Acknowledge to yourself that you have no idea what they are going through
Like I said, you basically get discredited when you say " It will all be alright" as someone who clearly doesn't have a clue about whats going on.

2. "Man, that sucks"
As weird as it sounds... this is a fantastic initial response. Its acknowledgment of what someone is going through. It's not "OMG I'm so sorry!" which leads to ...

3. Don't tell me your sorry
I don't want pity. That's actually one of my biggest issues. I don't want my friend feeling sorry for me. Unless of course you caused my cancer... then be damn sure I want you to be sorry. And if your aren't, be damn sure you will be once I'm done with you.

4a. Don't give me unsolicited advice
This is uber tied in with listening to what I'm telling you. No seriously, it is. Sometimes I'm asking you what to do. I'm not always asking you what to do. Sometimes I just need to vent. Before you go on to tell me what you would do, what you think I should do, what your Uncle Patty did, etc, try asking me what I plan to do, or what I'm doing. If I'm not directly asking you for your opinion, but you have some insight, say something like, "My Uncle Patty had x cancer, so I can recommend some things he did." or "when I had x cancer, this is what I did." I'm more receptive to advice when it comes in the form of your experience. It gains a little bit more credibility, and feels a lot less like you are telling me what to do. You have to remember that I'm being told by doctor every day what to do. I've done hours of research into my disease, read countless blogs on how to live my life outside of cancer.

4.b Don't talk to me about God
*a slight caveat here, if your cancer friend is religious, then this isn't a bad idea.
But if they aren't, or they don't talk about faith first, you probably want to steer clear. Look at the end of number 3. Its human nature for us to blame things when life isn't going so hot. These things include God. If you ask me, like my dentist did, how being sick has affected my relationship with God, don't be surprised when I give you a blunt answer. Talking to me about God's plan, or maybe how I should find faith to help me through isn't the best advice. Faith is harder when you've been told the "C" word... instead try:

5. Talk to me about what practical things can be done
Ask me about the science. This goes after the listening stage. Telling me everything will be ok bad, but sitting me down and making me figure out what can be done can be good. Make me look at the science, let me tell you the plan of action. And if I dont' have one, work it out with me... unless I'm in "nothing's going to work, everything is bull shit," mode... then I probably just need to sit and yell for a bit.

6. I need to talk to someone who is not my best friend
This doesn't always make sense to people. Honestly, it doesn't always make sense to me. But it goes with not wanting to make someone close to you hurt or worry about you because you are so close... I think. But sometimes I just need to talk to someone that is a little more detached. Maybe someone who I was close with then fell out of touch with pre-cancer. Someone who can talk to me about something else, and remember who i was before. Who hasn't sat and watched me change. Who won't be emotional if I need to lay bad news down.

7. Don't be surprised or hurt if I push you away
This is sort of a foil to number 6. If your in my closest group when I get sick, you just have to bare with me. We have expectations of our supporters... they are rarely met, hence this set of guidelines. We don't want you to feel hurt. We also change. Sometimes having our friends that remind us of who we were just before getting sick is a little harder to deal with.

8. Be careful how you offer help
This is probably the second most important thing on here. No matter what you should offer help. I'm always surprised by how many of my friends don't do this. Which then just tends to build up the concept that me being sick is an inconvenience to them and their lives, resulting in me feeling alone and sort of shutting people out. Less close friends are fine just saying, "Let me know if you need anything." But again, this is a really just generic phrase. You're saying it because you should, not because you really want to help.

Take a more active approach. "What needs to be done?" or "What can I do to help?" If you just leave it up to me to contact you... that isn't really helping, and chances are I will feel far more like a burden. Planned, strategic help. That's what we as cancer patients need. Or just tell me what you are going to do. "Do you need someone to go with you to the doctor?" "Well, no... I mean, it would be nice, but you don't have to if your busy." Vs. "Ok when's your next doctor's appointment, I'll go with you." Do you see the difference?

9. We don't like to ask for help
Its a humbling experience when we ask for help. Its the sign that we have reached our limitations. We don't want to inconvenience you. You should recognize that. If I've actually asked you for help, its because I genuinely need you. Nothing is worse then asking for help, and the person at the other end not realizing its important that they be there. And if you genuinely can't you phone tree, and you find someone who can.

10. Random acts of Friendship
We don't want your advice or your pity. We don't want to solicit you for your help or friendship. We are tired, and sometimes things like interpersonal relationships are what suffer. We need you to pick up some of the slack. Don't always wait for an update, pick-up a phone and call me. Send me a card to know you're thinking of me. Just do something nice for me. Always remember that the hardest impact of cancer isn't the disease or threat of death, its the emotional impact. We feel alone. I feel alone. Whether it is rational or not, I need you to show me that I'm not entirely alone.

And that's about the general gist of what you should and shouldn't be doing with someone who has cancer, and what you should expect. As a final note, remember that we cancer patients tend to be very emotional, whether we show it or not. And I can't emphasize enough how much we feel like we're alone in how we feel and what we are going through. Even with other cancer fighters, each battle is different, each battle is personalized; no one actually has the same experience. But we all need the love and support from our friends and family.