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… 😛

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!!!

The Garlic Effect

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Yeah, yeah, yeah, I know. My next post was supposed to be about my radiation therapy.

I got a better idea. It’s my blog – sue me!

I was e-mailing with some friends earlier when this idea for a blog post popped into my head, all about The Garlic Effect.

Or – how being sick and having a finicky thyroid can make your body go straight to hell!

You know what The Garlic Effect is, right? We’ve all seen the e-mail…

Well, in case you haven’t got a clue what I’m talking about, let me illustrate for you:

Me, approximately two years ago (actual Julee ass)

Why do I have pictures of my own ass on my computer? Long story. Inside joke. I’ll briefly explain.

I posted on an internet messageboard with some other race fans, and every time I posted a new picture of myself, one guy kept saying “Turn around!” So one day, I finally did, and kept turning around every time I posted a picture.

Now that you understand, moving right along…

Me, now (NOT actual Julee ass – simulation only!)

BTW love what the person who had this pic on their website named it. Check the URL.

After spending weeks completely sedentary trying to dissolve massive blood clots in my leg without breaking them loose to travel up to my heart, lungs and/or brain, my body looks like crap.

Not only do I have garlic ass, my stomach is a candidate for a new tattoo – the Goodyear emblem comes to mind! (not actual Julee gut)

And as if that weren’t enough..

Glandzilla made my neck fetchingly attractive as well. Once I had surgery, I had a neck again – for about three days, till scar tissue formed. Then, after that subsided, it was time to screw up the looks of the whole works again with radiation treatment, swelling my neck up again. (not actual Julee neck)

Put it all together, and right now, I could be twins with this guy: (not actually Julee)

Will I get back in shape? Oh sure. I will. I have one more (unrelated to cancer) surgery to endure and recuperate from, then it’s nose to the grindstone – or ass on the rower, more specifically!

Who wants to be workout buddies?

Tap Dancin’ on a Land Mine…

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I’ve begun this blog post a million times, only to backspace like a madwoman, or highlight and delete it all.

See… each time I begin to tell this story – it ends up sounding serious, sombre and bordering on the maudlin.

~yawn~

Not only does my storytelling thus far bore me to tears, but it isn’t me. This wasn’t my frame of mind when all this was going on.

I’m hopeful I can still tell the story of my surgery with the same outrageous sense of humor I displayed at the time… so I’m going to try starting there.

The entry title? Oh. That. Yeah.

This surgery was risky from the beginning. I’m on blood thinners already – but would need to go off them for five days both prior to a biopsy on my thyroid (by now affectionately known as ‘glandzilla’) and prior to the surgery to remove it.

I was risking developing a clot… one that would silently develop, travel straight to my heart, brain, lungs, and at the very least possibly vegetate me, maybe even kill me instantly… but if I didn’t stop taking them, I risked bleeding too much.

Opting out of surgery was out of the question. Glandzilla had grown to such epic proportions, my trachea was being crushed.

Those of you my age or older… remember the Friday Night Frights on TV that scared us half to death with old horror movies? Remember one movie called “The Blob”?

I can remember a scene from that movie – people running screaming out of a movie theater, with the blob hot on their heels, absorbing everything and everyone in its path, growing ever bigger as it slimed its way down the main street of town.

That’s what glandzilla reminded me of.

It was choking me, absorbing me – slowly killing me.

But was I running down the street screaming in fear?

Well… no.

I remember one particular visit to my surgeon’s office, after she’d explained to me the seriousness and gravity of the situation. She’d told me she wanted me to take all my films (I had a library of ultrasounds, MRI’s, CT scans, you name it by now) and see a cardiovascular surgeon.

She feared the thyroid was wrapped around vital vessels… but couldn’t tell. She needed a cardiovascular surgeon to see me, look at the films, and promise to be there on standby the morning of my surgery – in case she needed him to take over.

Not an ultrasound, not an MRI, not a CT scan… nothing would tell her how deep into my chest glandzilla had grown. All she could see was that a gland that, when healthy, is about the size of a walnut, had extended beneath my clavicles. Nobody knew exactly how far. Nobody knew exactly how much involvement there was with my aorta, etc.

It was getting riskier by the second.

On my way out the door, her clerk handed me an envelope with some paperwork I’d asked for, and I just looked at her deadpan (pardon the continuing puns) and said: “What’s this? My death certificate? Boy, you people really ARE proactive!”

That was my attitude throughout my experience with cancer.

Why be any other way but how I normally am?

We didn’t even know yet that cancer was involved, but I knew it was a possibility. If present, it would change the way I had to live my life, at least temporarily.

I’d be damned if it would change my personality as well.

Fast-forward to the morning of surgery.

Cardiovascular surgeon appointment complete, he didn’t think he’d be needed, but agreed to be on standby, just in case.

Biposy performed on the left side of my neck – the side on which glandzilla seemed to be growing more rapidly. Made sense. If there was cancer, it was most likely there.

No cancer cells found.

All the questions asked, all the answers given, the entire procedure explained to me in detail, step by step, each scenario accounted for.

I just shook my head.

“Sounds like an awful lot of trouble and fuss to me, doc.” I said. “Can’t we just get rid of it right here and now? I got a pocket knife…”

She had my number by now.

“I’ve got some booze at the house…” she replied.

Oh yeah. If I was going to lie on a table and allow someone I barely know to slit my throat open – it was going to be her!

Speaking of getting my throat slit…

That was the exact thing I said the morning of surgery when the poor, unsuspecting desk clerk at the hospital asked if she could help me:

“Yes, I’m here to get my throat slit.”

Her reaction was epic. My only regret is that I didn’t go through with ordering that t-shirt with the picture of a Pez dispenser on the front…

My youngest son, who by now had descended upon me to take care of his mommy, could only (rather unsuccessfully) stifle the giggles and shake his head at me.

I gave him a look that said “Wha?”

More head shaking.

The last thing I remember before going under was one of the OR techs asking Dr. Cohen if she thought I’d appreciate a joke. I don’t remember her exact words, but she definitely confirmed that jokes would be just fine with me…

He looks at me as they’re lifting me from the gurney to the table and tells THEE lamest, stalest OR joke ever:

“Know why OR’s are so cold? It’s where we keep our beer!”

Oh please. Bring an A game if you want to deal with me. My retort?

“It better be Leinie’s. If I die because of drunken ineptitude on your part it better not be for skunk beer!”

Darkness.

Next thing I remember, I’m waking up to the sensation of a tube being pulled from my throat, immediately followed by an oxygen mask clamped over my face.

I don’t remember a lot of what happened next, but I know that the end result was me with a completely blown out left hand from my IV ripping out, and one oxygen mask, though still around my neck, only hanging loosely open below my chin for the rest of my hospital stay.

I don’t like anything over my face – at all.

I’m sure there was one hell of a fight. I’m also pretty certain I won, judging by the lack of insistence by anyone crossing my path in Condell Medical Center for the next three days to make me wear that mask over my face.

I think this must have been what Dr. Cohen meant when she came out and told my son “She’s going to be just fine! She’s back to her old self already!”

She told me how it all went. Despite her fears, especially after she opened me up to see that the gland extended much farther down than she’d guessed, glandzilla wasn’t attached to anything vital, and was the same lift-and-out delivery she was accustomed to with much smaller thyroids. Mine was 14 centimeters – on just one side. No cardiovascular surgeon. No parathyroid glands lost. No vocal cord damage.

She’s good.

I’d survived the biopsy and the surgery. Three days in ICU and then it was home to recuperate, and it was all over.

Or so I thought.

Follow up visit with the surgeon a few days later.

“The reason it took me so long to get you out of surgery, is because we found cancer cells on the other side of your thyroid – the side we didn’t biopsy. I went over you with a fine tooth comb, and I didn’t see any more. Now am I telling you that you have a shortened life expectancy? Not at all. The type you have is, as a rule, slow to spread, easy to cure, and more people have it than they realize. 60-65% of cadavers I examined in medical school had it, and didn’t ever know it. But… we have to take some precautionary measures.”

I sat and listened attentively, canning the wisecracking and respecting her professionalism for once… just minutes after I’d told her I was recommending her work to anyone who would listen: “Yeah doc – your name and number is on the wall of every public bathroom in Lake County Illinois with the message ‘For a good time in the OR – call Angelique!'”

Did the news take the wind out of my sails?

Of course not. It must have been a hard thing to tell me though – I would imagine you never really know how a patient is going to react to something like that – so I behaved myself for once…

But not for long 😉

The fun – both in the literal and sarcastic sense, was just beginning.

Next time, I’ll have to tell you about my radiation treatment.

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