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.

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.

Bad Hair Day

Two weeks ago some fabulous bastard in Russia somehow or another managed to use an ATM to take all my money in my bank account. Since then I've realized I'm a bit on the poor side right now... and certain things, I just can't afford anymore and I need to figure out what I can live without... This leads to the question of whether I can live without my hair.

Its not that drastic of a leap. It starts off that i have naturally super curly hair, afro curly hair. Its so big, and fluffy and well just looks weird on me. So, last summer I got it straightened... permanently... well not entirely permanent... as I have to redo it every so often... and in here lies the rub... in the US, this costs a little over $400... poor people do not do well with things that cost over $400... so then you need to start looking for alternatives... in my case i can cut it all off, start over, regrow it curly starting short, donate my hair to cancer kids. Or i can perm it, and hope it doesn't look weird as the curl comes in. And so i sit and i pull my fingers through my hair, something i could never do curly.

Then with each stroke, and ruffle there's another reminder of why neither of these might really be an option. Its falling out. A lot of it is falling out. It has been since the last round of radiation, but its gotten a lot worse in the last month. We aren't talking a few strands... we're talking i have to unclog my tub after every single shower. I comb my hair and a handful of *wet* hair comes out... a handful of wet hair is a lot of hair. So then as I sat on the couch and hair just falls around me. I can't get it to stop. i just ran my hand through one more time, casually, 4 strand come out. i have a lot of hair, its not like I'm going bald... but i can see where its getting thinner... and I can't help but wonder how long it can keep falling out. straight or curly, long or short... I'm known for my hair... its sort of my identity. If this stupid cancer takes it away from me... its a change i don't have control over, its a change in my identity that i don't control. Metaphor for my life? Quite possibly.

So what causes the hair to fall out? the side effects of radioactive iodine are worse 2-3 months after dosing. Its been 4 months. Hypothyroidism makes hair fall out. So that would imply that my meds are off. Which is what i think... and almost hope for. It would explain the tiredness, the depression, the mental slowdown, the writers block, the inability to focus and read, to get the thoughts from my brain to my mouth, the weight gain etc. etc. etc.

And other alternatives... the other what ifs... i'm still waiting... waiting for my blood work to come in, waiting for the news of the cancer still being there. Then what, electronic beam therapy? Chemo? Well doesn't that just leave my hair shit out of luck, eh?

Its my one true vanity. Maybe in that sense it needs to be taken away from me. Truly humble me. Right... b/c I wasn't ready to give up all my material aspirations to go join the peace corps for life 4 years ago... oh wait, no, that's right, it was Americorps first... I was clearly so self centered in my need to devote myself to helping others that taking away everything in a few steps is exactly the best way to crush that sort of spirit. Sorry. I'm teetering into another topic plaguing my brain. Guess for now I'll just watch my hair fall out and sit and wait just that much longer for whatever it is that's coming next.