Three Year Checkup

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I’m a little late with this (surprise, surprise!) but I had a three year check done on my thyroglobulin.

That measures the presence of living thyroid cells in the body, and is, therefore, a cancer marker test for me. If living cells were found, I’d have to undergo more tests and procedures to be sure there was no cancer present, and to make another attempt at ablating any living cells.

The sad part of all this, is that I had to actually request this simple blood test. The doc wanted to run all those yearly tests, plus my T3, T4 and TSH (thyroid hormone levels) but the thyroglobulin? Never occurred to him…

Be proactive, folks. I preach it like a southern revival meeting. If you don’t take care of business, nobody else will. Don’t assume your doctor will. Most won’t.

Anyway… my results?

My thyroglobulin reads out at <0.2. That is to say, undetectable. This is great news. My thyroid cells that remained in my body after my thyroidectomy have all apparently died. 

All my other tests came out normal as well. Even my cholesterol levels, despite my extra weight. Yay and go team me!

I feel fairly healthy, but after three years, I suppose there are some things that are as good as they are ever going to get. 

I still have a huge bulge in my neck. Not sure why, but it isn’t getting smaller as I’d hoped it would over time. It messes with my looks, but not much I can do about it.

My teeth seem to have stopped crumbling into pieces, (yes, they were literally doing that) but I still need expensive dental work that still isn’t going to get done anytime soon. Rant about Obamacare all you want, my beef is that health insurance won’t AND NEVER HAS covered dental care needed to preserve or restore health, despite the fact that it’s damn near common knowledge that if your teeth and gums are ailing, your overall health suffers, even to the point of diabetes and heart trouble. Go ahead – google it, if you didn’t already know. If it affects your health, why isn’t necessary work covered like any other health issue?

I still have trouble swallowing sometimes. 

I still can’t eat anything too spicy or tangy – and by that, I mean I can’t even eat ketchup but sparingly. My taste buds around the edge of my tongue are damaged and they go crazy. I can’t handle it.

My voice is still froggy a lot. I can’t sing most of the time. It’s a pain, but when you consider that my surgeon warned me that my vocal cords might be damaged enough I could lose my voice entirely when she was done taking out glandzilla, I am fortunate.

I am real fortunate.

Now if I could just win the lottery.

I could at least get my damn mouth fixed…

Fun With Radiation Part Three: The Putrid Pill

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Sorry for leaving this alone for so long, boys and girls. I know you’ve all been waiting with bated breath for the next entry, much like I waited for each new installment of the Gunslinger series. No? What’s that? You’d forgotten I even had a blog?

Oh.

Well, anyway…

When I left off over two years ago, I’d told you about the icky shots I had to take in preparation for my I-131 treatment, now it’s time to tell you about that lovely experience.

I don’t know if Networked Blogs even exists anymore, let alone whether or not it will still automatically post this entry to Facebook. We’ll see. I’ll manually post if it doesn’t do it on its own. So here we go…

I’m a bit proactive where my health is concerned. I began that practice back in 2002 when my thyroid first began giving me trouble, and I was mis-diagnosed as having a neuromuscular disease. (I’ll explain all that in another post another time, but for the love of all that is holy, folks, please remember that DOCTORS ARE NOT GODS even though most of them think they are. Their word is not law and they don’t always know what they’re doing!) So, I began googling I-131 isotope and reading.

Nice. I’m about to take a huge dose of what probably caused my thyroid cancer to begin with. The. Exact. Same. Isotope. Gives a new meaning to the cure being worse than the disease. I couldn’t help but wonder: Okay… this is supposed to kill any remaining thyroid cells in my neck as a precaution.. but there’s no guarantees that it will kill off every living thyroid cell, and I’m wondering what this cancer causing-and-curing isotope coursing its way through my body is going to do to other parts of me?

I almost didn’t take it… but in the end, after much reassurance from my endo (who I never liked, he kept me on a “need to know” basis, and my theory is, if it has to do with MY BODY, then I need to know.) I relented and scheduled the appointment with the radiation oncologist.

Oh, never fear. I still had a lot of fun with it.

I was led into an isolation room with nurses on the other side of a huge glass window. I had another moment of pause as I glanced over to a table obviously meant for those with more serious conditions than mine, with the iron mask full of holes lying at the head. Once again, I have a solemn moment of wondering if this could be in my future. Once you get that diagnosis, it’s always in the back of your mind, forever: no guarantees.

It was only a moment, though.

Before I could pop off a smart remark to the nurses on the other side of the glass about being in a lineup and how I was being framed, the doc came in and asked me if I’d been to the bathroom yet.

Well.. no. Was I supposed to? Apparently, yes. So, I hopped back out of the chair and dutifully followed her down the hall to the bathroom, all the while muttering under my breath about how I was already potty trained, throwing the nurses into fits of laughter.

Good beginning!

Got back into the isolation room, and doc opens up a huge metal door on a huge metal cabinet and takes out a huge metal container. Solid lead, I’m told, and she hands it to me so I can see how heavy it is. Am I in a sci-fi movie? Feels like it.

I asked her if there was a red pill or a blue pill inside. She’s obviously not a Keanu Reeves fan. She doesn’t get it. A nurse snickers, and I wink at her. Even though doc doesn’t get it, she has a good sense of humor, and smiles.

matrix-red-pill

On my initial consultation visit, I was given a list of precautions I have to follow during the time I’m irradiated and for up to a year afterwards. Don’t share a bathroom with anyone for 7 days. Sleep alone. Wash my clothing, towels and bedding separately, etc. I can’t get pregnant for six months to a year. Oh, damn the luck. I so wanted a baby again at age 52.

I read the stuff before coming in, I know what to do, but they send in the “radiation safety officer” from the main hospital wing to read it all to me again, go over it, ask me if I have any questions… he’s a young guy, maybe mid-twenties.

Y’all know me by now, reading this, even if you don’t know me. You know the gears are turning, right?

He reads the part about abstaining from sex for two weeks and I interrupt him.

“Wait. Does this mean I can’t take you home with me after I swallow this pill and see what this “cougar” business is all about?”

Oh, it’s so worth it! He turns fifty shades of red (not grey) and the entire staff, doc included, completely loses it. LOL.

The poor kid finishes his spiel, can’t wait to get out of there, I’m sure, doc opens the container and hands me the pill. I pop it. I’m immediately ushered out the back door like a homewrecker fleeing the scene when the wife comes home early…

Then the real fun begins.

I’m pretty much a homebody at heart anyway, but you know how it is. Once you’re isolated and can’t go anywhere, suddenly you’re going stir crazy, wanting to go EVERYWHERE!

I can’t do anything but sit around working remotely on a laptop, at a job I despise anyway, and people watch from a distance through my patio doors as the rest of the world goes on about its business. I have a brief moment of self pity, which I hate, and I quickly brush it off. Oh, you poor thing. You can’t leave to confines of your apartment for a week. Boo hoo.

Not going to bore you with the details of that week since they are just the same thing over and over again for 7 days… just note that the pill did indeed make me feel a little queasy, but nothing to get into a twist about. It could have been a lot worse, and I know it. I was lucky.

Maybe next time I’ll tell you about my theories concerning how I ended up with thyroid problems to begin with, and what led up to my diagnosis of hyperthyroidism and the ensuing years of fun and games leading up to my cancer diagnosis.

I’m not making any promises about when “next time” will be.

Fun With Radiation Part Two: The Sucky Shots

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First of all, I would be remiss if I didn’t give a shout out to my biggest stalker fan in Philly – what would I do without you? You keep me in line. I’m sure I’d be running amok were it not for your tireless watching over me – so thanks! :)

Now that proper credit’s been given where it’s due…

It’s been about 6 months since I wrote part one, so just to refresh a bit:

After I had my thyroidectomy, and cancer cells were found, a round of I-131 radioactive iodine therapy was prescribed for me, for which I had to prepare my body, so that the treatment would be its most effective.

Part one dealt with the special diet I had to go on, to deprive my body of iodine, so that when I swallowed the capsule, the thyroid cells left behind would absorb it and begin to die a slow death.

I also had to be in a hypothyroid state before taking the treatment. This used to mean that patients had to stop taking synthetic thyroid medicine for a while before treatment, and let their body go hypothyroid naturally. It was a long, agonizing, symptom-riddled, and sometimes in some cases, downright dangerous process.

Then, along came the wonder drug Thyrogen. It mimicked a state of hypothyroidism, and accomplished it in a matter of three days. All a patient had to do was have  a thyrogen shot two days, and then another one day, before treatment, and voila! No days and weeks of suffering to be ready. Easy peasy, no?

Yeah hang on a sec. This is my life we’re talking about here.

Nothing is ever that easy with me!

The same day I had my thyroid removed… the FDA cracked down on Genzyme, the maker of the drug, for unsafe conditions in the plant that manufactured Thyrogen, and severely limited its availability until further notice.

My endo was explaining the process to me in his usual, skim over the highlights, need to know basis way…

He said I had my option of going hypo naturally, or taking the drug, he was certain I’d be an exception and be allowed my doses, but there was risk involved.

I asked what kind of risk?
“We don’t know.”

Huh? What do you mean you don’t know? How do you know there’s risk if you don’t know what it is?

So as per, I had to get proactive, come home, and google for an answer. It seems Genzyme’s plant in Allston, MA. was having a slight problem keeping their vials free of such things as steel, rubber, fiber….

Nice! I could get a vein full of miniscule metal shavings!

Now I had to decide if I wanted to run that risk, or go hypo naturally and suffer the symptoms.

I asked my surgeon. She hadn’t even heard this was an issue.

I asked the radiation oncologist about it. She sat there silently and looked at me as if I had three heads.

I guess I wasn’t really being given much choice. Nobody was offering me a target date to stop taking synthroid before treatment… so shots it was.

Side effects were possible (uh, yeah, no crap!) but nothing like I’d experience if I did it the hard way.

Alex didn’t want me taking the shots. He was afraid of what might happen. He didn’t understand what would happen for certain if I opted out.

Dutifully, two days before my radiation therapy, I arrived at the endo’s office for my first dose.

So here I was… having been celibate by choice for quite some time… finally alone in a room with a man again, and he’s asking me to take my pants down and bend over…

But as is my usual luck, the only thing I got was a needle the approximate length (and girth) of a knitting needle jammed into my butt cheek…. by a man who turned out to be sheer evil (also my usual luck!)

And all it did was make me tired and sick to my stomach…

but ready for my glow in the dark close up, Mr. DeMille!

Stay tuned for part three…

Fun Things To Do When You’re Radioactive

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* Disclaimer for the gullible:

No, I did not really do any of these things, and no, you really shouldn’t either. You should stay far, far away from people for 7-8 days while you are irradiated and take all proper precautions to keep from exposing them. TIA & GB

 


 

1: Drive to O’Hare and walk through the security gate, just to see what happens. If it creates a fun little disturbance, rinse and repeat at Midway and Mitchell if you can run fast enough…

 

2: Leave the light off when you use the toilet at night and glance in the bowl to see if your urine really does glow. Take pictures, send to your friends, and post them on the internet if it does!

 

3: Drive through Starbucks with a radioactive symbol hanging around your neck.

 

4:  Stand outside a hospital with a sign that says ‘Human X-Ray machine: $20.00 – Why pay more? Get the best for less!’*

*sorry, no insurance accepted at these ridiculously low rates!

 

5:  Grab that annoying neighbor and give him a deep, passionate kiss, then walk away satisfied in knowing now he’s either only got 30 seconds to live, or he just became sterile, either of which is a win-win situation as far as you are concerned!

 

6:  Let your spouse walk in the bathroom and catch you ‘accidently’ using their toothbrush.

 

7:  Order pizza delivery. When the pizza guy shows up, break out your radioactive sign and stick it on the outside of the door with a sheepish “Almost forgot – sorry!”

 

8. Determine the location of the nearest nuclear power plant and walk around just outside, listening to people inside freak out as the ‘leak’ is discovered, but never pinpointed. Giggle. A lot.

 

9.  See if you can reheat leftover spaghetti by sitting it on the table next to you.

 

10. Wait till the next person is using the bathroom you kept to yourself for the week you were irradiated, then let them overhear you say “I don’t remember… did I clean that bathroom yet?”

Six months gone

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I’m at the six month marker. Six months ago today I had my thyroid removed.

It’s been three months since I had I-131 therapy.

So how am I doing?

My new doc says I’m doing fine.

He’s more patient than I am.

He’s weaned me off three medications my old doc had me on that weren’t necessary. That would be why she isn’t my doc anymore.

I can tell a difference – but it isn’t going quickly enough to suit me, of course.

My resistance is still shot. I have another nasty cold.

My salivary glands are experiencing some swelling that comes and goes, so when it comes, I go back to massaging them and sucking lemon drops.  Is that permanent? I don’t know. I know it’s a result of the I-131 therapy.

My voice still sounds like I have a cold, even when I don’t, so I am assuming that’s as good as it’s going to get. I am extremely fortunate. As big as glandzilla was, I might have lost my ability to speak altogether. My vocal cords were stretched – but not broken.

So sorry, all you ex husbands… :P

My mouth? Let’s not even go there. Things weren’t great in that department before all this, and now it’s just intolerable. This illness and the treatments prescribed for it will mess your mouth/teeth/smile up big time in record time – and Blue Cross doesn’t care. They haven’t had to mess with me before now, though.

I feel like I’m in the fight of my life regaining my health, my energy, my old body back…

But I’m up for it ;)

It’s also six months since I stopped smoking. I had my last one the night before my surgery.

I’m sure I feel better because of that, but with all else that’s gone on, I’m not sure what benefit it’s given me.

As soon as my surgery was done, the wheezing and coughing stopped – all signs of an enlarged thyroid – that I had chalked up to smoking and thought “Yeah, I guess I really need to quit one of these days…”

Since I stopped smoking the same time I had my thyroid removed, I guess I’ll never know how much was thyroid and how much was smoking.

I guess it doesn’t really matter?

Tomorrow is Thanksgiving.

I have a lot to be grateful and thankful for.

I survived a very tricky surgery that I highly suspect not even my kick butt surgeon thought I would survive.

I am rid of a gland gone out of control that was literally killing me.

I have my parathyroid glands intact so that I don’t have problems with my calcium levels as well.

My cancer has not spread. The radiation oncologist told me that whatever cancer might remain, it is confined to my neck, and the thyroid cells left behind post-surgery are dutifully absorbing the I-131 isotopes, which should make them die.

I still have to remind myself all the time that there are never any absolute, final answers.

But I still claim survivorhood.

I have a wonderful support network of family and friends all of whom I love so very much. You all know who you are – and if you don’t, you should.

So…

Have a Happy Thanksgiving, y’all. I know I will. Just the fact that I am still here is enough for me, for today.

That doesn’t mean I don’t have a mile long wish list for Santa though!

Fun With Radiation, Part One: The Dreaded Diet

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I’ve knocked around how to talk about this radiation therapy thing for a while. It needs to be done. I have people telling me how ‘brave’ they think I am, and I think maybe some folks are under the impression that I’ve soldiered through some long, drawn out, painful, sickness inducing ordeal, and that just isn’t the case, folks.

I popped a pill. That’s all.

There was some preparation ahead of time, to be sure, but I didn’t have the same type of radiation used for more aggressive or prevalent cancer. I didn’t have to don one of those mesh masks and lie on a table while radiation was burned into my body. I had no chemotherapy.

I just popped a pill.

A radioactive iodine pill.

I-131 isotope, to be precise. This radioactive isotope is designed, in my case, to attach itself to, and kill, any thyroid cells remaining in my body after thyroid surgery to remove the gland. Any cells left behind could be cancerous, or could become cancerous. Best they be gone, as a precaution.

There are four types of thyroid cancer. As I’ve said before, the one I have – Papillary Thyroid Cancer – is the least likely to be aggressive and spread, the easiest to treat and cure, and the radiation oncologist told me it’s more of a nuisance than anything else.

Oh yeah. It’s been that alright. Beginning with The Diet.

The Diet is the First Circle of Hell.

The radiation oncologist told me about The Diet.

It had to be followed for two weeks prior to taking the pill. It is a low iodine diet. NOT to be confused with low sodium, though you have to avoid processed foods containing salt, because you don’t know if the salt used was iodized… so you have to pass. You have to lower your iodine intake as much as possible and let your body deplete itself of iodine, because thyroid cells absorb and process iodine. They needed to be eager to absorb the radioactive iodine that would kill them.

Read labels sometime. Even MILK has salt in it. Even FAKE MILK in the health food stores has salt in it. Sea salt, at that. A no no.

Even if it didn’t, dairy was a no no anyway. Iodine is in the solution used to clean components of automatic milking machines, and gets in the milk used for drinking and creating other dairy products.

Anything with a high iodine content was a definite no no.

No seafood.

Seaweed is high in iodine content, so I couldn’t have that. So what, you say?

Did you know seaweed is in a LOT of grocery items? It’s disguised on the label as an ingredient called ‘carrageenan’.

I couldn’t even have my fru fru creamer in my coffee because even though there’s no dairy in non-dairy creamer – there is carrageenan. Go ahead. Read the label of your coffeemate in the fridge. I’ll wait.

See?

The doc gave me a list of foods that were okay – that looked like it could fit on a 3 x 5 index card – and told me if it wasn’t on the list – don’t eat it.

That pretty much left me with this:

and this: (with no milk, mind you!)

I’m a foodie. Cancer wasn’t killing me. The Diet was killing me.

I went into the doc’s office for some paperwork, and the desk clerk asked me how I was. I told her I was fine but The Diet sucks a major one.

She laughed and said “Yeah, it’s not real fun, is it?”

Another guy at the counter says to me “Vodka has no iodine content. Just sayin’.”

Ha! Someone else with my sense of humor! Just drink myself silly for two weeks till I can eat regular food again!

I had fun with it – but I had my moments too.

My first visit to the radiation oncologist’s office gave me pause.

Just the word ‘oncologist’ began to hit me. Cancer doctor. I had this? Cancer? Me?

I walked in and saw an office full of patients in various phases of cancer treatment. Some were younger than I was, but emaciated down to nothing, cancer and the treatment to fight it having whittled them away to skin and bones. Skin that had that pallor about it that cancer patients get. Women in turbans, bald underneath. Some so weakened they were using walkers.

Brochures in racks with titles such as “When It’s Time For Hospice Care”.

Unnerving place, this.

Was this my future, I wondered? I looked, and pretty much felt, healthy right then… but would I soon look and feel like some of these other people? Would I be sitting there at some point with a calm, serene, accepting expression on my face, knowing my time in this office was nearing an end, and not because I was well?

Once I took the pill, I’d have to stay isolated away from people for a week. I’d have to work from home. In order to do that, because HR departments are the epitome of anal, I needed a letter from the doc stating it was okay for me to work from home… which it would be. Barring any violent reactions to the radiation, I’d be perfectly healthy enough to work from home. I just couldn’t expose other people to my irradiated body.

I asked the doc’s office to fax me a letter I could give to HR stating her okay with me working.

It came. I opened, I read:

“blah, blah, blah, diagnosis: carcinoma of the thyroid, blah, blah, blah…”

No… wait. I don’t HAVE cancer. I HAD cancer cells in my thyroid and it was now gone! No thyroid = no cancer!

Moments like that… unnerved me a bit. I shrugged them off as best I could.

The most frustrating part of the two weeks on The Diet, however, was finding out on my own, instead of being pointed there by one of my docs, that there is a wonderful website dedicated to people who have thyroid cancer like me, and have gone through the same treatment plan I’ve gone through – and they’ve written a low iodine diet cookbook. It’s on the website. In printable PDF form. And there’s real food in it.

Real. Live. Food.

Amen and amen.

If, God forbid, you or anyone you know ever needs this treatment, and enters this First Circle of Hell called The Diet, please, for the love of all that is holy, point them here:

http://www.thyca.org/

I’m a WordPress dummy. Every time I try to make a clickable link on one of my blogs, it doesn’t work like it’s supposed to. Sorry. Copy and paste. You can do it. I know you remember how.

Now you know all about The Diet. Not a lot of fun, but I could have things so much worse.

Next time, I’ll tell you about stage two of the treatment - The Shots

The Second Circle of Hell.

The fun just keeps on comin’ folks!

One of these days…

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I’m gonna tell you all about my radiation. Promise.

But today I’m gonna tell you about my visit to the endocrinologist.

I had bloodwork done a few days ahead of time, and I started making a list of questions I wanted to ask him, one way or the other.

Why is my neck still swollen and sometimes numb? Is that going to go away?

When will my immune system return to normal? (I had flu that hung on for two weeks this month!)

Is my voice as good as it’s going to get? I still don’t have a lot of volume and range…

Questions I ended up not having to ask – because for now, nothing further is necessary :)

My T3, T4 and TSH were all checked. They are right where he wants them. They have to be a bit elevated because of the history of cancer cells.

For the uninitiated, those are all measures of my thyroid hormones. And as a refresher, since I had my thyroid removed, I have to take synthroid – synthetic thyroid hormone. My body obviously doesn’t produce any more, and your body has to have some.

He also had my thyroglobulin checked.

This is a cancer marker.

High numbers mean there are cancer cells prevalent. Low numbers mean not so much.

Before I had my radiation therapy in August, mine was a little high. Not bad, but enough he wanted all my remaining thyroid cells ablated.

Today, it was low. Way low. Low enough he was smiling when he checked the results, and he never smiles.

This means that the cells I had are dead or dying from the radiation. It worked. I don’t need to do any more till next February.

Then, I will have a chest x-ray, an ultrasound, and more bloodwork.

My swelling and numbness may go away in a few more months. My voice may get better. My immune system will get better with time.

I’m just taking that in stride instead of pushing him for more definitive answers.

There are none where cancer is concerned.

That’s really been the hardest part. I’ve been lucky enough to be pretty healthy all my life, and I am used to going to a doc for whatever small ailment I have, getting a pill, that fixes it, end of story.

This story never ends. I’ll have to be checked occasionally for life, in case it returns.

But for now, I’m free till February!

So this is for you, papillary thyroid cancer. I rule. You drool. I’m kicking your ass!!!

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