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.

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.

Some explanation

So, imagine my surprise when my little blog I created, pretty much just to vent suddenly has over 100 hits and people that keep coming back. I've even gotten a few messages from some of you out there, and it occurred to me that if I actually have readers, maybe I should write a little bit more, and a little more coherently, than in just those moments where I need to vent. To all of you out there who have shown your support or sent me messages, thanks!

One question that has been asked on me is what on earth I meant by the title, "Death by Lettuce." I figured this would actually make an amusing post.

I'm going to take you back now to April/May 2001. I know it was about this time b/c I graduated from college on May 1, and I wasn't allowed to eat anything. I was on the low iodine diet for the first time. I was meticulous in my desire to stick to the rules. No one was more careful, and I even took it to extremes. Basically, I just ate fruit and veggies, as I wasn't willing to risk anything else. I wanted my body to suck up every single last little drop of the I-131 so it would kill any and all remaining cancer.

Now towards the end of all this, you aren't really a particularly pleasant person. At least I wasn't. I was miserable. I was hungry. I was still gaining weight. I was an emotional wreck... graduated college, but couldn't eat my cake, and had to pack and move. So one day, my friends took me to a little Italian restaurant. I wonder how many of you out there get this... your friends and family are all trying to be supportive and things... but keep taking you out to eat... as if you can eat anything. In my bitterness, I bite my tongue and go along. And I sit with my ceasar salad... no cheese no dressing... basically a pile of green leaves. But you tough it out... you consider stealing a crouton or a piece of bread. Then you go home.... still hungry, still tires... and for me, to a room that was no longer really my own, as all i had left was a seat cushion, from what i can't even remember, and my bed, and my computer on the ground.

A basic rule of thumb for me is that I can't actually eat raw spinach. I try... I love cooked spinach... especially on a pizza. But, I've tried raw spinach a few times, and it basically makes me sick as a dog. So, basically, my lovely plate of greens, was a plate of spinach. And i spent the night curled up on my seat cushion typing sideways to anyone i could find online... my stomach killing me. And me not really sure if there was anything actually in there that i could get rid of. And so then, I thought... I'm dying... the stupid greenery is killing me... I'm going to die due to spinach... essentially lettuce. Lettuce poisoning. Death by Lettuce... and wallah... there was a title for something.

Some people live under the gun, i live under the knife

There's a problem that runs in my family. People have a tendency to like to be sick, or a need to go into surgery, or something like that. I read up on this a while back ago... about how a lot of people feel the need for surgery as a way of getting attention, sympathy, etc. I didn't even tell most of my friends i was getting surgery. The story goes, my parents came home while i was in the hospital and my roommate didn't even know why they were there... this is why you should read e-mails from your friends... on occasion they have important information... I also hate sympathy, doctors treat me a lot like I'm glass... I hate being hugged. I mean arbitrary hugs... hugs where people just walk through the motions... or worse expect me to. There's very few people i hug with meaning... saying goodbye, or to maybe someone i love I'll hug tightly out of fear it'll be the last chance I'll have to do so. Basically the point is i don't like the attention... Nor am i particular fan to pain... and I really don't like painkillers... most don't work for me... vicadin makes me puke... codeine has no effect... I'm not doing it for the high.

So why all the fuss about "another surgery"? Didn't I say recently that I got my first clean bill of health? (if i didn't, i apologize... i did get a clean bill of health for the first time in 4 years)... no, now I'm trying to fix all the things that got broken. December 10th will be my 4th surgery. This time around it is to fix my tear duct... or to be more precise, my tear drain. I have watery eyes. Not just a little watery... but rather the kind of watery where I'll be doing absolutely nothing and a tear will just slide down my face. Its mainly my right eye... though the left wells up in the cold from time to time. It started in Feb. 2006. I got it checked out... they said it was from wearing my contacts too much and it was just a case of dry eye. Yes, dry watery eyes. The way the explained it was that certain glands dried up from my contacts and they had enzymes that moisten the eye, so the eye thought it was dry no matter how wet it got. so they had me microwave a sock full of rice and put it on my eyes for 10 minutes twice a day. I wish I were joking.

The annoying issues came first. Constantly being in a state of tears is a little overwhelming. And oh the people who try to hug you, ask if everything is ok... But nothing is wrong... of course after a while you can use it to hide when you might actually be tearing up. For me the hard part is the fact that I'm a law student. I stand up and i talk, and argue, and do things in front of people all the time. When i get nervous, you better believe the tears well up. Nothing is worse being mid competition or a job interview with tears running down your face.

And they aren't real tears. I've done my fair share of crying over the past few years, and I've found that when i really cry, my tears are saltier. This is just water coming out with only a hint of salt.

The second issue, the far more serious issue, are the physical effects. In the past year the tears got to the point of not just being a moist eye but being full blown tears that roll down your cheeks all the time. You are always touching your eyes. They get minor infections. Eyes get crusty at night, sort of mucousy for a week... i can't tell you how many times i went to the doctor thinking i had pink eye. And then my contacts started getting blurry, and fall out a lot... which is annoying and a health issue. So i decided something needed done.

By this point I had heard that a lot of people who get I-131 treatment have problems w/ their tear ducts. And my doctor recommended me to someone deals with this kind of case regularly.

I got poked and prodded. They actually stuck needles in my eyes (like that rhyme... cross my heart hope to die stick a needle in my eye-- I'm so using this on my kids... and tell them i lied once and got 3 needles in the eyes)... ok so they weren't exactly needles... they were syringe needles... and it wasn't exactly my eye... but the little tear ducts in the corners... they stuck the needle in the hole in tried to inject them with water. this is easily the most weird feeling on the planet... and even worse when you feel the liquid go in, get blocked, and spurt out again... that's just weird.

And so now... yet another surgery. heh... and another scar. They'll make an incision under my eye and stick in a new drainage tube between my tear duct and nose... which they'll have to break some bone to do. i can only hope that this works... I feel a lot like I'm working on picking up the pieces left over from being sick, and trying to stick them all back in place again... stopping the tears would be surprisingly big.