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

RadiologyInfo
*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.

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?

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?

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 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.

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-)

Giving Young Adult Cancer the Bird

In case you haven't picked it up already, I'm not really a big fan of cancer, and don't really have any problem with being angry at it, or being disgruntled, or being a smart ass when it comes to dealing with it. Its like all the rebelling I didn't do as a teenager was really just waiting for the opportunity to rage against the cancer machine, or something like that. (Okay, if you met me, you'd probably find me to be one of the most passive and mellow people ever, unless I'm writing... I'm even really quiet and sort of shy). But all that is besides the point; i[2]y has just came out with a new a new campaign that's all about giving young adult cancer the bird.

Basically, they are selling traditional advocacy wristbands at Spencers, and on facebook they are trying to get 10,000,000 million strong to give young adult cancer the bird. They are also collecting pictures of people giving cancer the bird.

This kind of leads into a look into two seized upon methods of advocacy that are pretty popular: facebook pages and wrist bands.

Now, a lot of people are like oh whats the point. I mean, yeah the bracelets do make some money; but really whats the purpose of the group, not like they are out doing a cancer walk or anything like that, right? But it is like that. Even if people just sign up to have their name on something. Even if you don't go out and buy a bracelet. I like it b/c well... I'm angry about having cancer. I'm not a super rebel, but its kind of fun, kind of relieving to be able to just publically announce how you feel. I also think that its something that's just extreme enough in title, that people will click and read what the group is about.

70,000 15-39 year olds. 30 years w/out a change in cancer rate. Yeah, we have damn good reason to be pissed off.

So do names on a list, just general members of a group make a difference? I think it depends. It makes a difference to me when I see the group, I bet I can find 1,000,000 people who hate cancer, and it has 1,160,649 members... I mean how cool is that... And it prompts conversation and networking. Whatever the effect, I don't think its hurting things.

As for bracelets... I'll be the first to say that I think wrist bands are getting a little out of hand... but I will also say, that as someone with specific interests in certain limited causes, I love having a bracelet, and having people ask me about it, and doing a little more educating. So it's a double edged sword there. I also find that few things are more attractive than when you see a guy sporting his little yellow livestrong bracelet. I don't know. I find it hot. It makes me want to actually talk to that person.


I kind of like this. I think each week I'll try to write about some sort of cancer advocacy or awareness thing that is going on. Let me know if you have any suggestions of things going on. And pass this on!!

On a random side note, I'm doing a lot better today, was even able to actually drive. I like seeing straight and getting my brain to function.

Would you like to take a survey?

So I've been juggling around about 50 different ideas of things I would really like to blog about. I think its kind of a side-effect of getting picked up by Wellsphere Health Blog Network, really getting into the different resources that are available out there for cancer survivors, and pure whole hearted effort to procrastinate and avoid studying. Not to mention I'm trying to space out blog posts; maybe write them and not post, so I have things around for weeks when not much is going on (yes, I'm putting in the effort of making this at least, a weekly blog).

But today's topic trumped all the others because I'm guessing it is a little more time sensitive. It is a survey about how cancer has affected your sexual life. I'll be honest, it's awkward to take. It's about 30 minutes of personal questions rating everything from emotions and feelings, to how you consider yourself in bed. I realize that a lot of you might be totally turned off by this, which I understand. But the purpose is to see the difference between people w/ cancer and people without when it comes to sexuality.

I have my own opinions about cancer and sex, and how much "the system" and doctors address the issue. I'm going to save those for a later post, maybe after the results from this study come out.

So here is the link:
The Sexual Self of Young Adult Cancer Survivors and as Compared to their Healthy Peers

Please take the quiz, and pass it along. It is for both cancer survivors and people w/out cancer.

Thanks!

Nothing to do with Cancer

This post has absolutely nothing to do with cancer, its a part of something else I have been working on, and I feel a need to share it everywhere!

This year I have been participating in a Street Law and Human Rights Education project. It was run as an independent study course. Basically, we go out and teach kids about their human rights. I, along with two of my classmates, was working in Braddock, with the Braddock Youth Project. You may have heard blips about Braddock recently, as the Mayor, John Fetterman, has made appearances on the Colbert Report and Fox News, and made statements in the New York Times. If you don't know anything about the town, I would say give the wiki article a read through before watching the documentary:

So, we worked with kids 14-18. And as a final project, we interviewed a few of the kids, and had them write and act out skits about things that they thought were important or relevant to their own lives. They were the writers, actors, and producers. We didn't even get to video tape. We did the editing, but that was just putting things in order; we didn't edit for content or because we didn't like an idea or thought it might be a little bit too controversial. I'm quite proud of the whole project, and hope that it gives you some insight into things. Oh and the opening scene, that's the Mayor of Braddock...

Obsession

After four years of cancer, this is my first year where I'm going into finals week without prepping at the same time for radiation. In a lot of ways, this is the "healthiest" that I have been in four years. But yet for some strange and unknown reason, I've recently become obsessed with all things cancer related. I'm reading a lot of other people's blogs; actually this is a new thing in general, I just randomly started reading blogs regularly about a month ago. I also read websites, peruse merchandise, etc. There's a part of me that wants to throw a stupid cancer happy hour, so that I can actually meet other cancer kids in the area; ironic because I'm leaving in two months.

I think there is a part of me that is so overwhelmingly tired of dealing with everything on my own, that I need to feel connected. And now, with a diagnosis of, positive markers, small new something, but too small to biops, lets just wait six months and see what happens, I feel like I need to be doing something more proactive. This concept alone could spin into a whole new post: the feeling the need to fight and take control of something. But I think I will save that for another time.

So for now, I'm left obsessing. I'm hoping with more free time on my hands to post more. Though I'm not sure what. This also becomes harder, with realizing how many people read, or when another, more famous blogger comments about how you write about the same topics and have the same view on things.
I also don't give this site out to my friends and family. It's sort of ironic in a sense. A place originally intended for me to vent my feelings so I don't bottle them, that no one was supposed to read, and that then turned into sort of a networking device to connect me with others... just not the people I already know and love.

So I guess my questions for the handful of readers out there are these: Do you find there is something that triggers you to obsess with cancer, not so much the disease, but the culture that develops around it? And, do you find it easier to not share all your feeling with your closest people for whatever reason?