Friday, July 31, 2009

Dear Thyroid...

Wow, a whole lot of things happening at once. I'm going to do my best to post about all of them, but keep them separated (ie, i'm going to write a few posts today, and then post them over the next couple of days). But I'm gonna start with the exciting one first.

Imagine if you will shuffling through web site after website about thyroid cancer and just cancer in general, suddenly stumbling upon one blog that greets you with old 1940/50's pin-up girls, and talks to you in thyrodized phrases that only person with thyroid problems would understand. Then you take a closer look at the actual blog posts and find letters, letters written to thyroids. After reading through a few letters, I knew I wanted in!

That was back in late May early June.

The blog is called Dear Thyroid; it was developed by Katie Schwarts and Liz Schau. It is a place where you get to a write a letter to your thyroid telling them what's what. And it isn't just about thyca patients, but all people that have thyroid problems. Lets face it, thyroids control so much, and a lot of raw emotion builds up when they go wrong. While chat rooms and discussion boards are great to find other people like you, its even better to find a flat out rant that says all the things you want to say but don't know where to start.

But I found that its even more than just a place to vent and share stories. Its also bee very educational. I find that getting sick creates this bubble. One where I care most about my disease, I push for advocating my causes, and spreading awareness about thyca. Its not a bad thing, I mean that is what is important to me. But Dear Thyroid expands the bubble. I suddenly know a lot more about different types of thyca, hyper and hypo thyroidism, and grave's disease. It's actually a great educational/awareness tool; I've been forced to expand my own knowledge bubble.

So after seeing the blog for the first time through search engines, I decided I wanted to write my own post, and found myself stuck still in that position of reading a, "rant that says all the things you want to say but don't know where to start." I know, me lost for words, shocking isn't it. So it literally sat on my desktop for months. I was thrilled a couple of weeks ago when I saw that buzz for Dear Thyroid was picking up steam. It sort of added extra motivation for me to sort out the raw things I would say to my thyroid if given the chance. Speaches have gone through my head dozens of times in the past few years. I've even named him Thyridious. (At one point I consider drawing a comic strip where Thyridious Canasarus was the vilain... he dressed in a lab coat and had a thyroid shaped head w/ lab goggles and gloves on... this never made it to paper)... And so I came up with Thyridiocy, my letter to my ex-thyroid, which you can find here.

I want to thank the ladies over at Dear Thyroid for this opportunity; it was a lot of fun to write!

I encourage all of my readers to give the blog a look, and to submit your own letters!

Saturday, July 25, 2009

Going on radio silence

... or blogging silence... not for long, but probably for the next week.

I'm realizing now I should have just waited to start the bit about monitoring, but I thought I would work on it as my break from studying. That was until I realized I've been spending about twice as much time blogging, interneting in general, or hitting up hulu than I do actually doing work. I'm also turning into sort of a psychotic, caffine charged, book worm, teetering somewhere between brilliance and insanity; this doesn't make for particularly good substantive blog posts (i tried, they were deleted... ramblings about specific performance contracts and vicarious liability of an owner of land in fee-simple determinable with a springing executive interest... who robbed a bank... with an unloaded weapon... but still managed to kill the doctor who had recently committed medical malpracitce to the mother of the defense lawyer representing the land owner... is there a conflict of interest?). So, I have just been leaving my computer at home, and suddenly productivity has gone up exponentially (though there is no hope for my sanity at this point).

Unfortunately it means shuffling the blog off to one-side until I'm done with the Bar (it's next Tuesday and Wednesday).

And with that, I am goin to diverge into a cross between a I need to rant and I would like to leave you w/ some words of wisdom based off of Bar hypotheticals (oh, and i can't take credit for all of these...):

1. Don't put conditions in your will... either leave your property to someone or don't... your sick twisted greedy need to control things from the grave will only come back to bite me, your lawyer, in the ass

2. In Virginia you are able to marry your cousin... first cousin... legally

3. Check to make sure you did in fact grab YOUR coat from all coat checks, NO you can't keep it if it isn't yours

4. Control your damn Domestic Honey Bees... Keep them out of your neighbors yard... especially if he is deathly afraid of bees. I don't want to spend my life thinking about the theoretical "so is a honey bee a wild animal"

5. Don't build a day care w/ a playground next to the nuclear reactor... just don't do it

6. Electric companies, when someone tells you to turn off the power, don't leave it on to prevent people from stealing the copper wiring

7. If you get a deed to land, just record the deed. Immediately. The same day even. If you don't, I guarantee the person you bought the land from WILL sell it again, and the other person will record, and then you are shit out of luck.

8. If you contract to paint a house... JUST PAINT THE HOUSE! The WHOLE HOUSE!!!

9. Don't lend money to Ban Krupt, or Wil B. Broke... In fact, you should awlays consider someone's name before making any decisions about how you want to interact with them. Like don't make contracts with He B. Slick.

And finally a real hypothetical:

The driver of a tanker truck was transporting radioactive waste from a nuclear power plant to a permanent storage facility in a remote western region of the United States. After driving all night, the driver fell asleep at the wheel and the truck crossed over the center line, off the road, and onto a homeowner's property, coming to rest after crashing into several glass cases containing the homeowner's collection of poisonous snakes, the keeping of which was permitted by local ordinance. When the driver exited the truck, he was bitten on the leg by one of the poisonous snakes and became seriously ill. Is the homeowner liable?

Tuesday, July 21, 2009

How far should we be monitored?: #1 the side-effects we know?

Ok, so here it is. Probably the most research I've put into a post, rather than me just talking from my gut. This is going to be a multi-post topic, I don't know how many post just yet, but if you have had something that might be considered a side-effect, let me know and I'll dig up whatever else I can find. I also think it is important stuff for us to think about right now when lots of questions are flying around concerning the cost of healthcare and the idea of nationalizing healthcare; this will also tie in with advocacy and screening campaigns. Are we taking too many unnecessary tests? Or not enough? What costs more, preemptive screening, or finding a disease down the road? Should treatment just be limited to the disease; or should it be expanded to treat the side-effects of the treatment?

One of the biggest things I've notice when talking to other people about having cancer, is after a while, everyone has a similar type of question, "hey... have you had x start happening to you? Do you think it could be a side-effect?" The fact is, no one seems to actually know what they should count as a side-effect of cancer or cancer treatment v. a side-effect of life in general. And yeah, I'm definitely included in this group. I don't want to be a hypochondriac, paranoid every time I think something is off. But at the same time, being a run down law student, I know that I probably pass off far too many things as just being a part of my everyday life. It isn't comfortable to report every little thing to the doctor.

The goal of these posts is is to first, try to identify the side-effects of having thyroid cancer, be it from surgery or I-131. Then in following posts, I want to look at those side-effects and try and figure out if they are things we should have doctors monitor. Its sort of a proactive list; something to make me feel less crazy about my side-effects, but also something I can print up, take with me to the doctor and be like, "look I'm having issues, I've found other people w/ my same issues, maybe this is something we should check out... Or maybe there is a giant research grant in it for you for identifying something that no one usually notices." And I don't want to say this will make you an expert, and I don't want to become one of those patients who claims to know more than the doctors, but I like the idea of knowing, hey my TSH is normal but I still feel hypo, maybe my Vitamin D is off?

This is a list of side effects compiled for just a general google search for "side effects of I-131"... I don't repeat things already said... but with that said, you would be shocked to see how limited most of the lists are, and how many just copy and paste paragraphs from one another. The legal side of me cringes. If you learn nothing else, it needs to be that you should seriously run through these things with your doctor, and take internet knowledge with a grain of salt.

These symptoms are from:
*suppression of bone marrow, resulting in anemia
*acute leukemia
*reduction in red blood cells and platelets
*Radiation sickness, including:
*chest pain
*increased heart rate
*itchy skin
*Thyroid crisis (what on earth is thyroid crisis?)
*Inflammation of salivary glands
*Chromosomal Abnormalities (WTF, what does that even mean?)
* 3 days post treatment:
*neck tenderness and swelling
*pain w/ swallowing
*sore throat
*About 3 months post treatment:
*Hair thinning

*Thyroid hormone pills every day
*"There are essentially no other permanent side effects from the procedure." (HAHAHAHAHAHAAHAHAHAHAHAHAAHA)

Women & Cancer Magazine
*allergic like reactions
*loss of taste
*increased risk of developing secondary malignancy (somewhere else, I've read that post thyca is a significant increase of then specifically getting melanoma)

Care First Blue Cross Blue Sheild

*Changes in weight
*excessive sweating or intolerance to heat
*feeling depressed
*unusually tired or weak

Side Effects of High Dose Radioactive Iodine for Ablation or Treatment of Differentiated Thyroid Carcinoma
*Ok, for this one you should just click the link and read what it says. Its probably the most comprehensive listing of side effects, even has charts and things, and descriptions... its only a few pages, and goes over in detail a lot of things already said, I'll point out some important ones
* Larcamal Glands, aka dry eyes/tear ducts sort dry up (which actually results in watery eyes)

Other side-effects of losing your thyroid; this list is mainly composed of things I've learned at thyca support meetings and conerences, along with reading a lot of discussion on facebook and PlanetCancer.
* memory loss
* hypothyoidism
* prone to getting sicker (not so much sick more often, just worse when you do get sick)
* calcium deficiencies
* damaged vocal nerves
* damaged parathyroids
* Vitamin D deficiency
* Sex drive mood swings
* Irregular periods
* Early menopause

And I think that covers more or less the entire gamit of things. For the next few posts, I essentially plan on tackling these things like a hypochondriac. I acknowledge now, not everything I'm going to suggest is necessarily feasible. Its more of, "in an ideal world where all health coverage were free, and ensuring good health and quality of life where the most important thing..." So chime in if you have something to add, and as we go through I'd also really like to hear from non-thyca patients about why you think doctors should be monitoring.

Saturday, July 18, 2009

Fitness Log #5

#5, really? I've been keeping track for 5 weeks? Weird.

This week's weight: 208, though I did drop to 2.65, but then, immediately upon weighing myself mom said, "lets get pizza" and I was like, "hell yeah, I want some pizza."

Was it foolish... yes. Did I learn a lesson about how pizza can result in gaining 3 pounds overnight... yes. Did the really hot waiter flirt ridiculously with me and ask me everything except my name and number... yes. Was the 3 lbs gained worth the attention and self-esteem boost... hell yeah. When I'm done with the bar, I expect to hit up the pizza shop more often.

I do have a new goal over the next week and a half though. I need to drop about a size. The Virginia Bar exam requires that you wear a suit. A suit to 2 6 hour days of the hardest most frustrating testing ever. I feel that I would be a shinier, happier, bar taker if my suit was just slightly bigger. So the exercise I do this week will probably be spent trying to tone up muscles and dropping a little bit of water weight... or something like that.

It's also important for me to be both physically and mentally strong. And, for the first time ever, I haven't waited for the last minute to start prepping. I'm not trying to jump into working out and eating well all at once this week. While physically, my body feels like its being beat up on on a regular basis, I don't feel weak. A lot of people I talk to are stressed. They're having mood swings. They're freaking out. I've been channeling that. And I think that works for me.

And because I've been doing it all summer, I'm not trying to over do it this week. I'm not like I was in the beginning where I was fanatical about weight food and counting calories. I can guestimate what I'm eating, and know how to keep things balanced. I recognize what foods make me feel like crap. And I'm not beating myself up if i cheat a little... I'm not trying to justify it to myself anymore. It's like I acknowledge and accept whatever I do, jump back on track, and just keep going without thinking about it... except for right now, as I'm writing about it.

I'm also regearing my diet this weak away from losing weight, and instead focussing a lot more on improving brain function. So avacados, dark chocolate, dark berries, green tea, etc, etc, etc. I may even force myself to eat some salmon.

And all of this has lead me to a rather shocking revelation: there is no such thing as an ideal diet. I'm serious. No matter how healthy you believe you are eating, diets need to be tailored to your goals and your life. Someone studying for the bar eats totally different from someone running a marathon. Even the difference in diet between losing weight v. building muscle is amazing. I don't think I have ever considered using a nutritionist before, but I can sort of feel how having one might make just that slight difference.

As cancer survivors, I can't help but feel that maybe a nutritionist is something that should come along with our treatment; doctors are not nutritionists. We put our bodies through hell and back again and then its just left up to us to do what we believe is right to get ourselves healthy. And our knowledge of eating right probably still has a lot to do with what we learned about the food pyramid in grade school.

I think that part of post-treatment recovery should include a meeting with a nutritionist. Or even a standard made packet of what foods will get you back on your feet depending on what kind of treatment you got. Just a random idea.

Friday, July 17, 2009

The War on Advocacy

So I've read this article floating around today about the bad impacts of advocacy and awareness efforts of such things as "Check Your Neck". If you haven't read it, you can find it here.

And its made me angry. No... not just a little angry, but quite frankly it pisses me off, and if it pisses me off just about how it handles thyca, then I can't imagine how other people trying to spread awareness for other cancers must feel, but am guessing its similar. Specifically the notion that thyca isn't that deadly and checking doesn't change prognosis pisses me off. This is EXACTLY what is wrong with doctors and their total distance from patients. I know that thyca isn't a super killer. But SERIOUSLY, you aren't just checking your neck to make sure you don't die; its a matter of quality of life!

To catch thyca before it gets in your lymphnodes, your parathyroid. Before it gets that chance to get into your bones or your lungs. To catch it before its side effects have a detrimental effect on your weight, on your brain, on your emotional well being.

It's not just about reducing the death rate!

Its to prevent an experience like mine. Where it seemed so obvious to my ob/gyn that I had an enlarged thyroid that she almost didn't say anything to me. Promoting checking your neck saves from that embarrassing moment when the doctor says, "You know you have an enlarged thyroid, right?" I mean really? How many of us even knew exactly what a thyroid was? And THAT is a problem. THAT is why we need a check your neck campaign.

Maybe if I knew, then it wouldn't have spread. Maybe if I knew, then they would have been able to take it all out when they grabbed my thyroid, and I wouldn't have to be constantly monitored to see if it pops up again. I wouldn't of had to have a neck dissection, over 500 mCi of I-131. A little bit earlier detection may have saved me some weight gain, and the emotional bits that go along with that.

And maybe if I had known anything about thyca, it wouldn't have been so scary! Cancer awareness, advocacy, promotion... actually make that awareness for any disease, suddenly makes it something you can control. If you find something suspicious... suddenly the ball is in your court. You've been told what to do. You know how to handle it. Breast cancer is the best example of this I think. I feel like, if i found a lump, I would know off the bat what to do. And I would feel confident that I caught it early, and it would save my life. Breast cancer has done a fantastic job about getting knowledge out there.

So I guess to be fair, I do need to ask myself if maybe the past few years have resulted in some trigger happy reactions when finding new nodules. The article suggests that detection leads to finding tumors that we could just live with and puts us at risk for other issues. Would you really want to take that risk? I mean, I hate hate hate hate hate biopsies... and it has taken me a long time to accept that i can just have tumors floating around in my neck and I'll be ok. This is a hard one. Maybe I would be a shinier happier person if i didn't know? Ignorance is bliss...

Hmph... I'm afraid I've talked myself into a mental conflict. How nice it would be to wander around knowlegeless... you know, until i just kiel over one day b/c my unknown cancer spread a little too far. The regret you would feel in learning that you may be dying from somethin you could have prevented?

Are we wasting money on unneeded tests? This is ironic b/c i'm working an an arch of posts about how closely our doctors should be monitoring us, what kinds of tests they should be running, and if they would improve our quality of life. I think for me, I would rather have control over my life, have the quality effected by tests, rather than disease.

I think the key issue now is that we don't have the ability and knowledge to determine the difference between what needs to be monitored, operated on, treated, or just left alone. If we had that knowledge, then this whole article would be moot. Isn't it better to start getting the knowlege, and the habits of checking out there now? Doesn't more detection contribute to studyies and understanding how and when to treat?

Then finally it comes down to, even with thyroid cancer, to that one person, who saw the advocacy campaign, checked their neck/breast/prostate/est, found something and got it tested, and it saved their life. 1,600 people die from thyroid cancer each year. If even just one of those people could be saved each year, doesn't that make it worth it?

Tuesday, July 14, 2009

Thyroid Cancer and Enviornmental Factors

So, I'm totally piggybacking off of last night's stupid cancer radio show, and fine tuning it to what I know about the environmental factors contributing to thyroid cancer, along with some theories. This topic isn't just timely b/c of the radio show, which you can listen to here, if you missed it, but also w/ yesterday's news article about how higher levels of detection do NOT explain the ever increasing numbers for thyca. So where is it all coming from?

There's a few listed risks around thyca, namely, age, gender, genetics, if you had radiation therapy before, and lack of iodine. But another big issue is exposure to nuclear radiation and fallout, from everything from a nuclear meltdown to nuclear testing.

What I find interesting tends to be the pockets and regions where there are high levels of thyca. Cities like Pittsburgh tend to be abnormally high. The region w/ the highest incidence of thyroid cancer is, surprise, surprise, Chernobyl. Malta is the highest in Europe (I don't know anything about Malta, but the charts are pretty disturbing).

Follicular thyca tends to be rerionalized in Africa, but this shouldn't be confused so much as an enviornmental issues, but rather due to the lack of iodine in the region. Most developed countries iodize their salt... for a good reason. If you rember ever collecting money for UNICEF, it went towards getting kids the iodine they needed.

I can't seem to find a specific chart to compare things with here. Its annoying; I'm waaaay to visual. What would be ideal, is if I could get a map that showed pockets of thyca and levels of radiation in the enviornment or their proximity to nuclear power plants. If you are a medical researcher, this would be a fantastic project. I basically feel like I'm just proposing random theories I can't back up. But basically, I would be willing to bet if you had such a chart, I think you could definitely link higher levels of certain types of radiation in the enviornment specifically to unexplained thyca (like me).

Now, the first time I ever learned about thyroid cancer happened to actually be while writing a policy paper focussing on the long term effects of nuclear testing (looking at everything from rehabitation to the health and environmental effects). With everything from yesterday, I thought it would be interesting to dig up my old report and see what it said.

Let me take you back in time now to 2004...

Summer of 2004, just days after I turned 21, I jumped on a plane and flew out to the middle of the Pacific, to an island called Majuro, the capital of the Republic of the Marshall Islands. I went out there for an internship with the U.S. Department of State. By now you should be pulling up maps and racking your brain as to whether you have even heard of this place... here, I've found a good one for you.

If you've never heard of the place, maybe you have heard of Bikini Island (just one of 1500 RMI islands)... if not for historical reasons then b/c Sponge Bob Square Pants lives at Bikini Bottom... a fact that I find incredibly hilarious and witty if it was done on purpose (lots of nuclear radiation, mutated talking sea life... at least thats how I look at it).

The historical context, based on research and interviews I conducted during my internship: Between 1946 and 1958, Bikini Atoll was used for U.S. nuclear and thermonuclear testing. (This links to a whole timeline if you are interested). All together, between Bikini and Enewetok, 66 nuclear and thermonuclear weapons were detonated. After President Johnson declared Bikini safe in 1967, 150 Bikinians moved back to Bikini. They were exposed to high levels of radiation. By 1978, doctors found dangerously high doses of radiation in the inhabitants due to Cesium137 in the food chain. According to Dr. (x) from the 177 Program (which provides health care for Bikinians), there has been an increase in cancers, particularly thyroid cancer, among those who returned to Bikini.

And that was it. That was the very first time I had heard about thyroid cancer. Just a handful of months before it invaded my life.

So what I learned there is that thyroid cancer tends to be linked to areas of high radiation, in particular selenium. Until I was effected, I really thought it was just a nuclear radiation issue. Despite claims that the radiation exposure in the RMI being "confined" to a few islands, as a whole, the population ranks amongst the highest levels of thyca in the world. A lot of people have asked me about whether I think that that is where my thyca came from, and its really hard to answer that question. Or maybe it was the long time I spent in Pittsburgh.

The next question then is, what can we do about it? Do we move people out of every place that has a correlation between thyca and radiation? What if there is also a correlation w/ other types of cancers in those same places? On a more theoretical side, if thyca were more deadly, would we then start seeing more efforts for evacuation? Or containment? Or at least monitoring?

Sunday, July 12, 2009

Vote for your cause to have a Media Makeover

For the cause of the week, I want to tell you all about CommuniCause. Now originally, I was going to be all about telling you to go and vote i[2]y (which if you are a young adult w/ cancer, and you've had interaction w/ the group, you should still do!) But after reading through the website and things, I thought it was more important just to tell you that it exists. I have no problems directing my friends on who to vote for, but for us, for cancer survivors, we have all found our own groups and things that we want to support, our own causes, and they all deserve the chance at winning a $25,000 media makeover.

Rather than detail the competition, I'm just going to copy and paste what CommuniCause actually says about what they are doing (the link to vote is at the end):

Help us, help othersHelp us, help others

Each year, MindComet, the interactive agency behind the CommuniCause campaign, gives back to our community by providing non-profit organizations free-of-charge agency services and donations. In the past, we’ve worked with the Orlando History Center, Habitat for Humanity, the American Cancer Society, Race for A Cure and Toys for Tots. We’re really proud of the work we’ve done.

This year, we just couldn’t pick a favorite, so we launched CommuniCause, allowing Americans to help us select the organization to receive our pro bono social media services. We are asking America to nominate and vote for their favorite charity that they’d like to see win the grand prize of a Social Media Makeover, valued at $25,000.

A winner will be randomly selected from the top ten charities that receive the most votes. Upon awarding the winner, MindComet will provide the winner with expert consulting services to help improve their social media presence and fundraising outreach. See Legal & Terms for official rules.

So, if you have an organization that has helped you through your toughest times, shown you support, or just genuinely represents your own passions, vote here on CommuniCause and do your good deed of the week.

Saturday, July 11, 2009

Fitness Log #4

If pain is weakness leaving your body, then put me in line for the worlds strongest woman.

The Stats:
Down to 208.5. Diet is... uh... still there? I've been eating what I'm supposed to... and then adding snacks lately. Something I hadn't done before, but suddenly, protein drinks aren't quite cutting it. I'm working on it. Oh, and my new trainer has changed up my diet... giving me new numbers to work with, but not a new menu. He upped everything except carbs; considering I wasn't hitting my original levels, I have no idea how I'll eat that much food healthily. Exercise wise, my cardio has been upped to 45 min 3 times per week. I'm trying to push it to an hour.

The new trainer pushes me a lot harder; I actually like it. The only big problem right now is that my right shoulder is all out of whack. So on Tuesday when we were trying to do do arms, my right arm just wasn't keeping up. This is strange b/c my left arm is usually weaker.

I don't have anything else particularly fitness related to talk about today... I'm waiting to see how much changes in the next week.

Tuesday, July 7, 2009

Watching other people die from cancer

I've been making an effort, although incredibly delayed, at getting out thank you cards to all my friends and family for graduation stuff, and a big part of trying to do that is hunting down everyone's address. While I wrote out invites to the parties, I left it to my parental units to send out invites, as I feel like the party was a lot more for them than me. I did my thing w/ my friends, the parties were all about showing me off, and really just getting the family together. But I'm digressing. On the address sheets my dad gave to my mom, he had also marked down the head count as to who was going to be at the party. As I was going through, I started noticing names of cousins and their guest count weren't at the party, and I knew what was coming on the last page:

Mary Sharky+ Charlie+ 2 guest 4

It was one of those moments that catches you right in the throat. Where you quickly look for someone on g-talk that you purge on, but realize no one would probably understand why you were upset.

Two days before graduation, my Aunt Mary passed away from cancer. I don't know the type, the family isn't that close to keep me up to date and informed. Nor did anyone tell me she was sick again, and they even waited to tell me that she even died. Like they waited over a week, and then my dad told me casually during dinner at a restaurant. And he only told me because he though I should know not to expect her and the cousins at the graduation party. Yeah, my family is sort of weird like that, and not in a good way.

Aunt Mary hasn't been the only cancer death in recent years. Back in 2003, before I was even diagnosed, my Godfather/Uncle Butch passed. They first found his cancer in his neck; that didn't help me much when they were telling me that I too had cancer in my neck. But upon dragging details out of my mom, it looks like he had kidney cancer, and it was most likely due to agent orange exposure in Vietnam. He was sick for a few years, and during that time we had managed to close a gap that grows when you don't ever see your family. He was always there for me when I was little; staying with me and my mom as my dad went out on six month cruises. He was also that glue that tends to hold a family together.

Just before he got sick, he ran into his high school sweet heart; they fell in love... again.

And then suddenly he was sick. The strongest of the family needed constant care and assistance. The chemo whithered him down, and I remember them having to drain excess fluid in his stomach. So then Thanksgiving comes along, his favorite holiday, and I made my trek out to Philadelphia a day earlier than my mom. And I had to sit in a kitchen and listen to my grandmother and I forget who else, I'm pretty sure it was his girlfriend, bitch and complain about how much they hated taking care of him. How he was just a big baby, and unappreciative, and wouldn't do everything that needed to be done. I vaguely even remember the "I wish he would just die" phrase being said. And all I could do was really just sit there... I lack the ability to stand up to my family and how they tend to treat/talk about people. I'm pretty sure that day has left a few lasting impressions on me. I never told my mom about the expereince.

The day before Christmas Eve, we got a phone call that he wasn't doing well. My mom told me that the next day I needed to go up to Philly to help take care of things. Mind you, at this point I was in Virginia Beach, about 6 hours away, and the entire rest of the family is in Philly. Being an incredibly stupid little 20 year old, and not want to have to endure a repeat of Thanksgiving, I wasn't happy about that idea. I remember driving off to my boyfriend's house, raging mad that no one else in the family was doing anything, and because, well I just didn't want to go. He died the next day. I don't think I ever quite forgave myself for being so self-centered that night.

After having a cancer of my own, I can look back at that experience and can see exactly what I could have done to be more helpful, and be more supportive, and hell even be more defensive. And at the same time I look at my Aunt Mary, and realize, I barely reached out to her at all over the past few years.

Just before I got sick I forced my dad to go to Thanksgiving with his family with me. It was the first time in about 10+ years that I'd seen anyone on his side of the family. I think it was that summer, only months after I had surgery that I saw the whole family at a party, and I learned that Aunt Mary was sick.

I don't know. It just sort of weighs on you. On here, we all turn to each other for support. We look for other people who know what we are going through, etc. But I can't help but feel when you are up close and personal with someone else that is sick, that you get the sinking feelings of guilt and mortality. I can't help but wonder if my presence, and my constant illness has the same effect. I also wonder how much seeing how unwell my family reacts to taking care of each other has influenced how I handle things. The last thing I ever want is to burden anyone, but do I push that to extremes, and lose my support as well?

Sigh... I don't think this is where I meant this post to go.

Monday, July 6, 2009

I am NOT a Vampire

That's what my mom has been accusing me of lately. Vampirism. I just can't seem to get a tan.

It has always been a basic rule of thumb that come summer time... I get dark. I've got a a whole whopping 1/8 Native American that combats with my predominantly Irish/northern European genes, and it causes me to turn nice brown. I recently came across a lot of old pictures of me and my darkness that only comes along in summer. Back in the day (before people living on the beach allowed things like skin cancer actually affect our daily activities), mom and I would compete on who could get darker, with my grandmother usually crushing us.

But something very strange happened... I don't really tan anymore. In fact even for me to get really sunburned, I need to be outside for multiple hours w/out sunscreen. Or I will get real dark, and it fades in a day or so. Its sort of freakish, and makes me look all pale and sickly all the time. Hence, vampire.

And then last year, as I was prepping for dosimetery (one day I will look up the actual spelling), I read the laundry lists of I-131 side-effects, and what would you know, it can apparently affect your ability to tan.

So that there is your random tid bit of the day about weird side effects of I-131.

Friday, July 3, 2009

Fitness Log #3

It's my Friday fitness long once again... but unfortunately I don't have great things to report.

Well, that's not entirely true, I have managed to hold my weight at 210.5; surprising as I've blown off the diet and exercise for the last week.

The accident has been the kind of stupid small blow that for unknown reasons seems to have totally broke me. I know I posted these sentiments on Monday, but that was 5 days ago... when everything still hurt, when I still couldn't see straight, when it was all very fresh. But here I am today, and I don't want to get out of bed. I'm tired of people telling me I need to be neater and that I need to clean, and I need to stop e-mailing and study. I'm tired of sleeping horribly, and w/ in 10 minutes of being upright getting massive headaches. I feel so staggeringly behind on trying to study for the Bar, that I can't help but wonder what the point really is. I'm tired of people who volunteer to "help", and do things you don't ask them to do (my laundry, making deviled eggs for me for a party tomorrow, appreciated to an extent, but not what I needed help with), and then get irritated w/ me when I do actually ask for something I need (rub out my neck and shoulder for the first time since the accident to try and get it to not be a painful knot of tension any more). And now i just don't wan to get out of bed, and I know that will only make the situation worse.

I think that having the fitness goal has been a major part of me being able to cope with life in general lately. A goal, a minor distraction. Besides blogging, its been how I've been able to physically channel all of my frustration. That sort of got taken away from me this week. For some reason, doctors don't like the idea of you running when you have a concussion... go figure. So the most frustrating event that's happened since May's lump in my neck, I can't do anything to physically to take my mind off it really. And then, I've turned to comfort foods. Little snacks that make me feel better... so basically this week I've blown off the diet. Everything just seems derailed and off track; I keep telling myself that next week I'll be back on a schedule and feeling good, and back to the diet and the trainer, and everything will be better. But today, when I need to be on track today... this sucks.

Actually, it's almost amusing strong enough to fight cancer but totally thrown by a fender-bender.

Wednesday, July 1, 2009

Reaching Out to Strangers

*that's my "I have a big ego" picture, and yes my bedroom is the same color as my blog

I would be the first to acknowledge that things in my world run along on their own synchronistic paths, that to any outside observer would probably look like either complete chaos or eerily consistent coincidences. Actually, I take that back... from my point of view that's what it looks like, so I can't imagine how outsiders would take it at all.

I am a gemini, and true to to that, I tend to have multi personalities, and juggle multiple things at once. Doing this blog seems to be no exception to this rule.

So last week, while I was freaking out about job interviews and things, I also had sort of an emotional freak out about the whole permanent cancer thing. But for whatever reason, just writing a blog post and sendin it out in the anonymous blogosphere of existance wasn't going to cut it. So instead, I wrote to the only other person I know of that has thyca on a permanent basis; Kairol Rosenthal from Everything Changes. And she has been awesome enough to respond to me in a blog post on her blog, and we've sort of been having a chat back and forth over there on the things I've been frustrated with lately... You can read about it here: Everything Changes . I figured if you follow along with things like my little rants, you might be interested.

What I like most is this is exactly why I started blogging and searching the internet community and digging up total strangers to talk to. Because when I had that complete freak out, I knew there was at least one other person in the world I could turn to that would actual get it. My EXACT problem. Not a different cancer, not a different chronic disease. And that, well, wow did that help. On my ego side, its kind of neat to see that I had real questions that other people had too, and in general are going through similar situations, even if not exact. I can only hope that I can give the same kind of support when someone needs it.

How this ties in w/ bizarre synchronicity is, not only did Kairol talk about my letter to her on her blog, but Matthew Zachary (i[2]y, stupid cancer blog and radio show) came across my last blog post, and has stuck links to it all over facebook and the stupid cancer blog. I'm pretty sure my blog hits have jumped exponentially. I'm also pretty embarrassingly proud to get attention for something that seemed easy enough to do.

So yeah, in a weird synchronistic day, my name has been plastered all over what I generally consider the main young adult cancer blogs in one day, for two unrelated topics. My ego is HUGE right now, and my studying minimal.

And since I'm talking about blogging, I'd like to direct your attention to some little tweaks I've made (I have no idea why I like to update on format changes to the blog... again, I think it goes w/ the ego and conquring technology in some small way). I've split general cancer blogs and cancer websites. I've also relisted all the blogs to show the name of the last entry and when they were last updated; this might just be more for me so i can see what blogs have updated recently all in one shot so i can read them, rather than scrolling through my bookmarks. I've also stuck a followers box. I've been avoiding this; part of me is content w/ just having a counter, but... how cool is it to say i have "followers" (again, I'm having an ego day). And I'm curious about who likes to read me... No pressure to follow, its just there for my amusement, and if you see other people you want to connect with. The last new feature I put up is a cool little map that puts dots to show where people are logging in from. While being dominated by US and Canadian visitors, there seems to be some UK regulars, along w/ hits from Germany, Hungary, Italy, Iceland, Bermuda and the Phillippeans. Now that's what I call networking. Oh, and I broke 1,000 hits last night. 8-)