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.

Who makes your decisions?

For as much growing up as you are forced to do with cancer, have you ever found that you lose your independence? Your privacy? Your ability to make your own decisions?

This has become overwhelmingly apparent to me as I'm currently trying to choose my current life course. I'm graduating in a little over a month. I'm taking the Bar exam in Virginia, which means moving home to study and until I can find a job, hopefully in D.C. (home is Virginia Beach). This, like all decisions in my life, is the smartest most practical decision. I can't help but feel that making, "practical" decisions has consumed most of my life... but that is beside the point.

So this is going to sound completely irrational, that's probably why I'm avoiding saying it, ok, here it goes. I don't want to leave my stuff. Its mine. I didn't ask my parents to rent a truck. I never said I wouldn't do it. It was decided for me that we couldn't afford to rent a truck and that I should give away my bed and couch. I don't believe that we have enough space in all of our vehicles to get everything home. And I'm guestimating that I would end up losing about $600 worth of stuff (devalued). But its mine. Stuff that I have bought over the past few years to pull my life together. Bookcase, dresser etc. Now A desk and a set of drawers that really just need to be tossed. I have a lot of other larger things, small enough to fit in a vehicle, but would still be too much for all the cars. No one has asked me about if i was willing to rent the truck, or what I was really willing to give up. I don't think they understand that my stuff, in my place, is all i have that is mine. My own decisions. My life. I don't think they realize how bad it is that I even decided to move home, to revert back to being a kid. I've lived alone for 4 years. 8 years since high school. And when I get my next place, I don't want to have to start over completely.

Cancer came my senior year of college, sort of prolonging how long i needed to be taken care of. It was decided that I couldn't do Americorp, and instead needed to go to law school so I wouldn't loose my insurance. It was decided that since I already had the acceptance to Pitt, where I already lived, and where my doctors were, that I would stay here. It was decided, the day after I had radiation, which apartment I would live in... which was also how my school was chosen... A deposit down and contract does that. It was "smart", it was "practical".

Mom is trying to organize my insurance for me once I graduate and turn 26. Which means she needs to know everything about me. She organizes my bills and everything too. This just means that I don't have any privacy in my health any more. I realize there's hippa, and everything else to protect me. But in a practical world, i don't have any money. My parents do. As long as I'm stuck in job search/graduation/bar studying/cancer testing limbo, I can't seem make my own decisions.

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.