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?

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-)

Turning Zombie

To begin, let me say I have an unhealthy obsession w/ zombies... like we all should... zombies are fun.



So they did the biopsy on my neck. 5 passes. Used a topical anesthetic... which did absolutely nothing. The doc also used a laptop for the ultrasound that was playing the lord of the rings soundtrack. Had me watching the screen the whole time too... If you are a doctor, always ask to see if your patient is cool with watching you jab a needle into their neck... The answer isn't always yes. Anywho, he was disturbed by how calm i was the whole time. I kept thinking about how big of a bruise I was going to have to be sporting at graduation. (bruise wasn't too bad, hair covered it... but the muscle was so sore i couldn't turn my neck).

So he looked at the slides , and to my relief... no cancer. (though he is sending the slides in to see if anything grows). He said it really looked weird, like I had necromancing tissue. Thats right, necromancing tissue... I am a necromancer. A zombie. A part of the living dead. (necromancing tissue = dead tissue... hence zombie).

On a venting note, i didn't tell my parents what happened this week. Why I hadn't really gotten to packing. And I got bitched at a lot for not doing it..but still held my tongue. They really only need to know if something is wrong.

What I forgot...

I'm getting another ultrasound on Monday at 5pm. They have instructions to check out the lump behind my ear. I'm not sure what is worse, it being a tumor they can take out or kill w/ alcohol, or just another swollen lymph node... When I say its pressing on a pressure point... it really is; and it causes a lot of throbbing pain, all the time.

How much have you wanted to make things about you?

First, let me apologize to people w/ questions, that i haven't gotten back to immediately. I just, this morning, finished my last ever law school exam. My brain is totally fried. And really, emotionally, I am completely spent.

I needed a hug tonight, but couldn't ask for it. It wasn't for being done w/ law school... though, in a lot of ways i've been in shock about that. The hug need ties back with Wednesday. I finally got to my doctor. It was just a check-up, and tune-up, before i move. But it also meant me saying... "there's something behind my ear... its pressing on a pressure point"... which in reality is driving me damn near insane... I mean, it is in between where the jaw connects just under the ear... that fucking hurts if you stick a marble sized lump there.

My doctor's reaction, after feeling my neck once, and not noticing it, was, "wow, yeah, there is a lymph node there."... Before I say anything... I want to say that I love my newest doctor. He is straight forward with me, and tells me directly what he thinks is going on. From a smart person standpoint this is awesome. From someone who just wants to be told everything is ok... I kinda want to throw large solid objects at him.

So being told that yes my cancer markers are positive, and something small but not big showed up on both the ultrasound and MRI, and that i need to wait... well the desire to throw something at him really comes through.

But then there is the new lump. And he acknowledged its presence. He expressed how he didn't think it was thyroid cancer b/c of its location. Right side, under ear. My cancer has always been on the left. No TC ever goes under the ear. I'm not sure to be happy about this, or cursing it. It could be something different... not just thyroid cancer... something new. It is in fact terrifying.

I had a nightmare the other night about getting chemo. I felt the needle in my arm near my right elbow. And i felt the pain and numbness as the chemicals seeped into my system. Imagination is a dangerous thing.

There are people out there, who may never read this, that I need to thank. Michael for listening to my crazy rants about dreams and whats happened. Heather, for always being there if I really need her. And Eric... I feel like I have to type this, b/c you might not ever know it in person. You were the first and only to know that things went bad recently. You didn't feel a need to hug me... and just told me it sucked... and that, that is what i needed. I needed tonight... out w/ people I know, but not really. It's easier to pretend everything is close to normal, and this year is really just an end to law school, and not everything else. I will probably never tell you all that happened this year, and how much being friends with you has been a way to vent, and to passive aggressively take out my feelings on the world. Thank you... you may not realize you've done anything at all, and I can't quite seem to pinpoint in words how it is you were there, but you were... thanks.

"I think I'm paranoid..." -Garbage

I think this is a side-effect of being told every single year that I have cancer still, usually after being told things are looking good. I’ve made very forced effort not to feel my neck anymore because inevitably, there is something always there to bother me. Actually this is incredibly true as I have a lymph node chain on the left side of my neck, just behind, and running parallel to my scar. There are about 3-5 lymph nodes that I can feel, and sometimes even see, especially when I get sick. But today’s paranoia is stemming from a newer lump, and even more disturbing is that it is on the right side. It lies just under my right ear, in that spot where there’s a gap between where your jaw and neck connect. I noticed it about a month ago, then I got sick, then I got better, and its still there.

Its probably just a swollen gland, maybe a blocked salivary gland, or a response to my allergies. For normal people, these are all reasonable things to conclude, and just let it go. For cancer patients, I think finding a lump has a very distinctive fear, or annoyance tied in. You don’t want to be paranoid. After a while, you become so tired of the tests, that you wonder if it would just be easier to let it go.

But there are other issues; it’s a lump in odd place. Even if I went in, the doctors are only looking for nodes in my thyroid bed, and focus on the left side. Asking them to probe a new area is like asking a little kid to eat a second helping of veggies. Then they argue, “that’s not where thyroid cancer is,” and your like, “what if its not thyroid cancer, there’s a lump there, I swear, you can feel it, its been there a while.”

And going along with that, I wonder how people deal with just random lumps when they don’t have thyroid cancer. Who do you turn to? How do the radiologists know what to look for? Why don’t they use that same level of diligence and searching when they handle all patients, just in case, a new bump is something different? In real world stats, getting one cancer doesn’t mean the likelihood goes down for getting another.

I think that sums it up. I’m paranoid. Have little ability to accept that I’m “fine”. And well… there’s another fucking lump on my neck where there shouldn’t be one.

Worst Day of the Year

Whoever invented February 16 ought to just be shot. Its just a bad, crappy, awful day. And this year has lived up to its full potential with flying colors.

In a nut shell, my cancer markers are positive and there is a new nodule in my thyroid bed that wasn't there before, but is unfortunately too small to biops, so i'll be doing an MRI in March.

This never ends.

2 long hours...

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

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

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

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

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

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

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

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