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.

My nose is empty

So today was.... weird, and probably one of the most disturbing experiences i have had yet.

I guess I should rewind a bit. The surgery happened, it went well. The pain, not so bad, sort of felt like a bad sinus infection or a mild migraine.

The scar, excellent... it healed super nice, you can't even see that anything is there really... unless you are me, and sit up real close to the mirror everyday staring at it.

I didn't even have a black eye really. With my glasses on, you couldn't even see the stitches... This was sort of sad b/c you sort of want to show off the shiner.

There's still a little pain and swelling now, a month later. Its not bad, and its mainly due to the tubing.

There was one tube in my nose for the past 5 weeks. Usually its taken out after 3. I opted to wait and enjoy my break at home. Its sown into the side of your nose, and looks like a macaroni. This is annoying as all hell. For the first couple weeks you fear sneezing it out. Then you catch a cold and sneeze out the stitches, only to realize its staying in place. Then a few days ago... it started whistling. But today... today was glorious, as they pulled it out.

My least favorite feeling in the world is stitches being pulled out of my skin... noodle out of the nose... same principal. And then it feels super weird and hallow... and suddenly you can breathe normally from that one nose hole. then it feels like there is a hair flapping around, and then there's sneezing... excessive amounts of sneezing... bring tissues with you if you get this done. Not only is there sneezing, but the tear drainage, yeah, that goes straight out your nose.

What i didn't realize was that the tube in my eye doesn't come out for another 6 weeks. This tube is freakish, and i didn't know it existed till i tried to rub it out the first day. It runs from the top tear duct to the bottom tearduct, and is what actually reconstructs your ducts. Surprisingly enough, they let me wear contacts again, despite the tubing, just as long as i knew to take them out immediately if anything got red or irritated. This makes me happy, as i've been in glasses over a month... not something I'm at all used to.

Besides relearning how to sneeze in order to avoid blowing out the macaroni tube the most unpleasant part of this has been that I've had to be on anti-biotics the whole time... so over a month of anti-biotics, its sort of messes w/ your system a bit.

So answers to questions and random things to know:
1. The initial needle in the eye... no it doesn't really hurt... its feels weird, mainly b/c you've never felt anything in that spot before and you suddenly are filling it with saline... its just an awkward pressure

2. This is actually a really long process... your looking at 3 months from surgery to end... there aren't a lot of complications... but just know that's how long it is

3. The tube in the nose can come out after 3 weeks, sometimes the top hidden stitch isn't dissolved, and so it doesn't pull out easily. Also the longer you have it in, the better you heal w/out having to worry about scaring over the hole. So if you don't mind the antibiotics, I'd say take an extra week to heal and dissolve stitches.

4. Grab an eye back.... the kid with eye holes. I found sticking in the fridge and throwing it on for 10-20 minutes really helped with pain and swelling.

5. After surgery... make sure you get "nose slings" my doctor gave me a bunch of these... basically... all it is is medical tape with some gauze... then you stick the gauze under your nose and tape it on. This is fantastic. Your nose bleeds/runs for like 2 days... even if you were allowed to, you don't want to blow your nose b/c it sort of hurts. Rather than dabbing and rubbing every thirty seconds, just stick this stuff on, and it takes care of it... especially when you are sleeping.

6. Take at least 3 days off, and be prepared to take one or two random ones. I kept on the big painkiller wed-Friday morning... but i only went off on Friday b/c i was getting ill to my stomach. Its either a reaction to the anesthetic or the narcotics... we haven't figured out which, as you don't really have one with out the other, but i've noticed day 3 after surgery is always sort of nauseating for me... i'm guessing its the anesthetic getting out my system. But yeah, that day usually sucks... and then 3 days later, the swelling went down, but then it sort of throbbed a lot sort of causing a migraine... i was also in the middle of finals... b/c i'm smart like that.

7. If you have runny eyes, but one is better than the other... stand your ground and just get both done at the same time. I didn't. My right I was really blocked, so they just did my right eye. In the months since that decision was made, my left eye has gotten a bit worse... not as bad as the right, but still pretty annoying... so i just keep kicking myself.

And overall, things are a lot better. Even with the tube still in my eye, the tearing of the right eye is definitely less than it has been in the last 3 years. This makes me immensely happy, and a more pleasant person... especially now that the noodle is out of my nose.

Preemptive fear

So my eye surgery is going to be on Wednesday. And what I wouldn't tell anyone around me is that as usual, it scares the begeebees out of me. That's right, 3 surgeries in 4 years and they still scare the begeebees out of me. First there's the superficial fears about how the surgery will go. What if it doesn't work? What if I'm stuck in a state of teary eyes for the rest of my life? What if the scar doesn't heal right? How much is this going to age me? What if i can't cover it up? I'm going to be a freak scar faced individual.

Well then maybe I'm overreacting to the whole thing. Maybe i don't really need surgery. Maybe this really is bearable. But then again I was at an advisory board meeting yesterday and trying to schmooze and talk to board members, powerful people who want to do things like, take my resume, and b/c of a combination of walking there in the cold, and throwing on enough make-up to hide that I'm in the middle of exam season, my eyes were basically balling excessively, and the only excuse to fall back on was contact problems... an incredibly bold faced lie, but one i use so often, that sometimes I even say it when I'm wearing my glasses.

Then next logical question is whether or not I'm doing enough. I'm only getting my right eye done, but the left eye has been getting worse... I don't want to do this twice. Sure it isn't as bad as the right eye, but there's still big gopy tears that stream down from it from time to time. So it isn't blocked? You still call a plumber when you you have a slow drain b/c you know eventually the water just isn't going to go down.

There's the irrational fears too. More along the what if side of things. What if something goes wrong during surgery? What if I have a bad reaction to the anestetic? My mom is allergic to anesthesia. What if i can't bounce back right away? Every time i do surgery i feel like a part of my brain dies... i feel forgetful... Thought its probably just in my head (pun not intended).

All of this is frustrating. I was stupid to schedule this now... but when else would i do it? really? Side effects suck. I just want to get back as close to normal, or where i should be, than before the cancer came and started screwing around with my life. These little, seemingly insignificant side effects, really aren't that at all. They are inconvenient annoyances. Permanent reminders of what has happened. And often it is the smallest of these things that is the straw that will break the camel's back.

I'm not particularly smart or talented or motivated at anything. And in that way, I have a lot of normal things working against me, the same obstacles as every other normal person. Its times like now where I feel like the only people that should get cancer (not that anyone should get cancer) should be people a lot stronger than someone like me. Someone that has more going for them so that they can make this their big challenge to overcome. Because if you are just sort of all around mediocre to begin with, how can you really do well? I'm babbling... so I'll stop now.

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.