How far should we be monitored?: #2 Bloodwork

After going through the laundry list of side-effects, a lot of stuff that are just immediate and short term can easily be crossed out. But there are still some pretty big things on the list, where a little follow-up could go a long way in improving how we feel.

I've done a lot of thinking over the past few days of why we don't present every symptom to doctors, and why its so frustrating to learn about things from other people w/ the same experiences. For me personally, the biggest issue has actually been an age thing. We are brought up with the common knowledge that between 20-27ish, everything changes, body wise. You slow down, you gain weight, your brain slows, metabolism changes, you find yourself getting... well, old. So if you are diagnosed at 21 w/ cancer, how do you tell the difference? And that's where I think that doctors should really step in, especially with young adults who don't have a clue about how their bodies will age. And I think doing blood work may be one of the easiest ways to make sure that things are in check and balanced.

We already have to do blood work on a regular basis as it is. TSH, T4, Thyroglobulin. But has your doctor ever tested you for any of the deficiencies that are associated w/ losing your thyroid? What about for the anemia or leukemia that has been associated w/ I-131?

T3 and T4 testing:

Most of us are on something like levoxyl or synthroid, which are T4 replacements. If you've done the slightest bit of research into medications, you probably have also heard of Armour, which is a natural T3 and T4 replacement, or you've heard of people who use a combination T4 w/ cytomel (t3). Personally, I'm a big chicken. I've heard so many conflicting sides to whether its worth using both, and then hearing about how hard it is to regulate levels on Armour, its hard to tell what to do w/ out some solid medical evidence that it would be good for me to do both.

Test: From what I've gathered, most blood work tests for thyroid hormone totals in the blood. But some hormones can be bound and unusable. So the recommendation is to test for free T3 and free T4. In case of things like, your body has trouble converting T4 to T3. I never knew this, but can guarantee it will be one of the big things on my list of things to ask about in the near and dear future.

Vitamin D:

This is absolutely huge right now, and not just for thyroid patients. Everyone is talking about vitamin D deficiencies. And apparently its something that requires more than just standing outside for 15 minutes every day. I just had to do blood work yesterday concerning my mysterious rash (don't get me started), and while we were at it, she said she wanted to run the gamit of blood work, check my thyroid levels, and I asked if she could do vitamin D. Its been on my mind; and to my surprise she agreed %100. She confirmed that she'd been seeing a lot of thyroid patients with D levels of 4 when they should be 30. And it was comforting to talk to her about the the testing because I saw that she had that familiar scar. So suddenly we were on equal playing fields; she knew my concerns as more than a doctor, and she fully understood the issues of deciding what was life changes vs. medical issues that needed to to be talked about.

Calcium:

I remember when I first had surgery, they put me on calcium pills for a while. But after that, nothing. Does anyone out there regularly get their calcium tested? Or is this just if they think that your parathyroids may have been damaged?

Anemia:

I only recently learned that I-131 can in fact cause anemia. Its also one of the things they are running for me. I thought this just happened if you didn't eat enough iron and protein. Girls have a harder time with it. Etc. Because it is something that tends to be so common, outside of thyroid problems, why isn't it just a normal part of blood tests?

Leukemia:

This is the last major thing that comes to my mind when we talk about post treatment blood work. I don't have a clue what I would look for if I were worried about leukemia, or any other new possible cancers. From what I can tell the symptoms are like being hypo, or being generally really run down. If there is anyone out there who has had this experience, I ask that you share. I don't think I've found anyone online who talks about this particular side-effect, how it was diagnosed, follow-up or anything like that.

I'm sorry this turned out to be a little more theoretical than I had originally intended. I know I asked more questions than I wanted; but that's why I'm writing on the topic. Is it crazy to want the doctors to run all these tests on your blood? Would it make life a lot easier if they could medically tell me that there is a reason I don't feel 100%? Can we as patients be trusted to truly evaluate how our bodies feel?

I was thinking maybe a chart would be useful for bloodwork. I remember calcium and leukemia being short term concerns. Having a chart that you can look at and say, ok, for the next 2 months I should get these tests, or be aware of these symptoms. It's simple, its basic, its a little piece of mind. A lot of doctors tell patients to keep journals of their blood levels, but rarely give you the exact numbers for every single test. Wouldn't it be even easier to just have something pre-set up to print out, and plug numbers in. It could be something the doctor provides, or even Thyca. A list of things that are generally tested, and what amounts they should be in, and then empty blocks to write your own numbers in. Again, it sounds so stupidly easy. And like its something that I should have done all along. But if there were such a document that were universal, that contained EVERYTHING doctors should be monitoring, I can only imagine that that might start standardizing levels of care. Imagine that, every doctor performing the same tests.

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?

Human pin cushion

As per usual... I'm waiting and I'm scarred. It's my favorite week of February. The week where i get poked and prodded, and find out if I'm still cancer free. I've decided that needles fuck with me. I don't really mind them so much, I'm fine with the physical part of being poked. But what sucks is that I'm not so great about thinking about it. It started Friday; blood work for a pregnancy test. Couldn't just pee on a stick, no, for the testing I'm doing they actually needed a serum... Tomorrow is the first injection of thyrogen, followed by a second one on Tuesday, then blood work on wed. and more blood work on Friday followed by an ultrasound and potential biopsy, and then i see my doctor on Monday for the results... Human Pin Cushion.

Thyrogen... side effects: nausea, headaches, etc... basically, even if I handled this stuff half as well as i did in the beginning, the side effects alone would mean I'm not going to be a shiny happy person. It's also one of those things you can't take when your preggers... hence the blood work pregnancy test, nor do you wanna get knocked up within 6 months afterwords... not that I would, but I dislike having my options taken away

I hate ultrasounds... its my least favorite part about being sick. I would rather just be cut open or radiated... its irrational, but its the truth.

I'm tired. And I'm tired of having to deal with this stuff. It wears on you. Tares you down bit by bit. I don't have hope... I don't hope that things will go well this time... its too crushing when it doesn't... I just wait... start planning... be prepared for the worst... have the back up plan. Its harder this year. I'm about to graduate school... I'm supposed to be making plans and back up plans for my regular life... having to create back up plans in case I'm sick... ha... sigh...

Back to being tired... I realize I'm doing a lot... I do a lot so i don't have enough time to sit and think too much... I rationalized if I'm too busy to deal with being sick, clearly I can't get sick... I discovered this time last year that was not how the real world actually likes to work.

But being tired started over break. I thought maybe it was just that i needed the rest. But I'm still sleeping... if I don't make myself get up, I sleep for at least 12 hours... all the time. I go to bed earlier than i ever have... EVER. and i keep gaining weight. They kept dropping my meds... I'm afraid they've dropped too low. I'm going to ask if they will put me on a T3, T4 regiment. I hear that using both helps with things like mood. Doctors tend to only treat what they see is necessary and skip what makes the brain happy... a hippie hypnotist told me this. Yes, I went to see a Hypnotist... He hit more nerves than your normal head shrink does in the first 5 minutes of talking.... and that was before he tried to hypnotize me... it was just something to try. But so I started reading up, and decided I really haven't felt normal in 4 years.

oh yeah... that's the other head fuck. Next Monday is 4 years. 4 years since i got a phone call congratulating me about getting in the the University of Richmond School of law... the first law school i got into... followed by 3 hours later getting a call telling me the biopsy had come back "suspicious"... It was he first realization i had cancer. So no pressure this week at all. I'm not worried to the point of being unfocused. I'm not panicking. Irrationally planning. Or snapping at people b/c they can't quite deal with their personal problems at all. *sarcasm* Oh yeah, I don't deal well with compassion anymore. People and their personal problems should just shove it if they made other commitments. People who use their shit as excuses, can kiss my ass if they really think they're going to get compassion out of me, or level their workload on me to pick up their slack. We all have issues. You get as much slack as I would expect, and part of growing up is knowing when you are more of a problem than a help in a project or to a team, and sucking it up and pulling out if you can't juggle accordingly.

Sigh... I was so much stronger than this 4 years ago. I wish nothing phased me... the way it did then.... now i border between numb and more tightly wound than anyone on the planet.

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.