That time the speech therapist made me cry

As I am trying to lower my shoulders and relax my neck and breathe from my diaphragm for the speech therapist, a ghostly stricture crushes my trachea. "Oh, that was weird!" I immediately said (while probably not using the proper breath support) and tears filled my eyes.

"What is it? What's going on?" she asked. I tried to explain the whole thyroid cancer thing, which she already knew about. It's not like it hurt, it just threw me back in the middle of that whole medical drama, which I thought I had transcended.

But no. A high school Facebook friend is having similar problems and had posted pictures of her fresh incision recently. That may have been on my mind. I've been kind of annoyed with her dramatic postings, wanted to simultaneously reassure her and smack her down. It's not even a real cancer! They should call it something else. Really, get a grip.

As usual, the one I want to smack down and reassure is myself.

Why do you have to be such a Puritan hardass? Why does everything need to perfect? Why don't you just chill? Why don't you speak up? (Because I'm in speech therapy because I lost half my vocal volume, you inner jerk!)

And the reassurance? Ugh.

I will try to reassure myself, too. But I am not sure that works. I have notebook after notebook of morning pages at this point, and I'm going to estimate it's 50% rumination, 30% self-reassurance, 20% lists. Yeah, I guess I haven't hit 110% on self-reassurance yet. Try harder.

I will declare this a victory in realizing that I'm not "over" it yet, and that I need to be kinder. To myself, for not being kinder. To my poor ex-classmate, for having provoked none of this. To my speech therapist, who had to deal with a crazy body memory of what it feels like to have your neck sliced open, no matter how expertly.

No worries, vs. NO, worries!

I was puzzled when I learned that the protagonist of the Fault in Our Stars (from here on, known as FIOS, just like all the cool blogs) has the cancer that I had. Except that it spread to her lungs. And she's a teenager. And she dies (I think. I haven't read the book or seen the movie, sorry). So, that's nothing like me, in every way. Right? Less than 2% of all thyroid cancers are in persons less than 18 years of age. And even then, Stages I and II of most types of thyroid cancer have a 100% 5 year survival rate (somewhat obvious, but this is the term for the rate of patients still alive 5 years later). Some literature even suggest that "cancer" is kind of an overstatement. It's usually a growth, which may or may not metastasize.

I'm only 4 years out, so maybe I shouldn't be so confident.

I have also been fascinated with the debate about mammography guidelines, for similar reasons. Here's another cancer that terrifies women, despite the fact there are much more likely ways to die. Annual screening keeps it on our radar, though, even when we have no risk factors.

So basically, we need to remain terrified because THEY (the medical industrial complex, where I have spent my entire career) only know how to diagnose cancer. They don't really know how to prevent it, and sometimes they don't even know how to look for it, nor do they know exactly how to stop it. But they know how to diagnose it. Because it's not cancer until someone codes it.

I like to be an obedient patient, and I've got insurance, so why not follow all the recommendations? I went for my annual physical, like a good girl. I confidently informed my physician that I didn't use the mammography order for last year because I don't have any risk factors. She did not agree or disagree, but gave me another order. My blood work came back right in the recommended ranges, woo hoo! So I thought I owed her the compliance.

I went to the appointment, put on the thin cloth robe, and followed the technologist's directions. She got it in two shots per breast (which might have been my first clue. Other times there have been multiple attempts.) I went in to work, barely 30 minutes past my usual start time.

The following day, I got THAT call. The woman on the phone emphasized that they do several call-backs every day, so it's not necessarily anything to be concerned about. Oh, and the radiologist recommended a tomosynthesis (new procedure, not necessarily reimbursed by insurance, 3-d images versus 2-d, from what I can google). That was a little disconcerting.

So I'm back in cancer terror. I've spent the last 24 hours wondering, would I be more concerned about an area of concern, or an all-clear? What if they want to biopsy? What if they find something, and remove parts of my body and try to poison the rest and it's all because they don't want to watch it forever? What if they don't see anything? What if I get hit by a Cadillac in the parking ramp? I was totally plotting on living until I was 90, or out of money, or both.

Because we are all going to die, eventually. When I listen to my gut, it says, no biggie sis, relax, which is what it said when I went through the thyroid terror, so I no longer trust it. Or I should have trusted it all along?

I am going to try to trust it. This is the time to think of Shantideva, and remember, "If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"

Grief Stages

I just read yesterday somewhere (it was apparently the Wall Street Journal - what have I become?) that grief processing takes 2 years, no less but possibly more, no matter what. I did the math, and yep, that seems about right.

You see, in 2009 it all blew apart. The job I thought I would be able to leverage forever was "eliminated" by my big box employer. I smashed my camera, stared at the sky, accepted underemployment, and got cancer. Just last summer, I stopped shaking my fist at the building every time I drove by. Now I realize, I feel at home in the vicinity again, instead of like some unworthy interloper who had been cast out of the temple and was about to get caught bringing flower offerings to the vengeful idols.

But, out of the rubble we built new structures. I sure wouldn't wish it on anyone else (well, I do still have ONE revenge fantasy, but let's not focus on that right now) but it turned out okay. Maybe even better than okay. I no longer wish it had never happened. It's completely neutral.

That being said, I do find it interesting that losing my job was more traumatic for me than cancer. Granted, I had "easy" cancer (in fact, I read somewhere else today that it might have been advisable to have used the watchful waiting approach instead of the removal of my little thyroid gland, but now I have nuclear melt-down super powers, right?). But my image of myself as a productive member of society with a respectable job was more important to me than (the image of) my own health. Ridiculous.

So what is it about our "careers" that we are so attached to? Is it because we feel that we have built something, that all of our success is entirely due to our efforts and skills and personality? I can see that, but there's this other evidence that it's dumb luck and timing and privilege and we don't really control it much at all.

I like money. I mean, who doesn't? But I'm starting to discover the edges of what is and is not important to me. When I see those "in power" unable to see the lies they live and enforce, it makes me a little nervous. How am I participating in their delusions? Do I go through the motions, or I do perform real service?

So, I guess this is the internal ramblings of my work existential crisis. What does it all mean? Did we just show up to collect some checks? Or are we going to DO something? How can I willfully offer my whole heart and intellect, knowing that it can be thrown away on a whim?

But that's what I have to do. I have to give it my all, always. I guess the good news is, it will only take 2 years to recover.

Real cancer

See, it is a real cancer. Roger Ebert's illness began with the thyroid, spread to the salivary glands, jaw reconstruction, the loss of his voice, etc.

Just this week, I had a follow up appointment with my endocrinologist, which felt kind of anticlimactic because there was no need to drive to Grand Rapids for some neck palpitation and bloodwork, and yet that's what they scheduled for me. I still bought my annual Anthropologie treat, a red/blue micro striped jacket with a pleated peplum and awesome yellow seam tape on the inside.

I love what Ebert said about technology. That just 20 years earlier, cancer would have really silenced him, but now there are technologies that can allow communication and expression to continue. And that's so amazing and encouraging.

So that's what we'll keep doing. All of us. I am also encouraged by the concept of having a point of view and supporting its even when "everyone" disagrees. Someone posted a clip of his review of Blue Velvet. If you're "cool", you're supposed to love this movie. Honestly, I haven't seen that movie since I was maybe 20 years old, so I can't really say if the current me would love it or not. But Roger gave it a thumbs down because it humiliated Isabella Rossellini for comic effect. Although that is obviously arguable, I LOVE that. (I vaguely remember agreeing with Gene Siskel more frequently, which is kind of interesting in retrospect also.)

But, it's Saturday. I am not yet dressed. No one will be bringing home groceries for me. I won't lean back in a precarious office chair, watching a tiny television with my dad in a filthy "den", noting the movies I will never see because they won't play in a smallish college town like this. Everything is different and the same.

The technology means I am typing with my finger on a tiny screen. I still won't see any movies on a big screen in this town, only if I remember to watch them on some other device. Some sort of opinion collation website will inform "everyone" as to what movie to consider "good". My chairs are more comfortable these days, and I clean more frequently. And it goes on. As it must.

Signs.

Coney Island Hot Dogs. Don't they make you think of internal organs? No?

Since this is sometimes a blog about thyroid cancer, I will confess that my most recent check-up was really bothering me. I didn't realize it, of course, until it was too late. I scheduled this routine follow-up ultrasound appointment six months ago, put it on my calendar, and watched it approach. No big deal. This cancer almost never comes back.

But I somehow worked myself into a frenzy before the appointment. To add to the fun frenzy feeling, I was of course running late. And the car was in poor repair. Plus I'd just had a hard week at work (apparently I can't do "whatever I want", management approval is required. The golden girl has left the pedestal.). So, I was driving through Parchment, frantically looking for a sign that things would be all right.

And there was LITERALLY a sign. It said, "I love you. - God". One of those infernal, cheesy, horrible church signs that all the cool kids mock. Okay, I thought. That was ridiculous. (I don't believe in the Old Man in the Robe "God" anyway, but I'm cool with the "universe" or "everything is god" god.) There's got to be another sign.

The next sign said "Sunny Burns." Might have been an accountant or lawyer. I'm not exactly certain I read it correctly, but it made me laugh anyway. Because Sunny Burns and Sandy Bottoms are the denizens of the beach. The beach where I've had the best times with friends. My friends that I love.

So, I made it to the appointment, rolling on love. The doctor declared my lymph nodes "beautiful", then apologized for getting so excited. (They were pretty cool looking on the ultrasound, but they didn't really look like hot dogs. I just like that picture.) I walked out into the unseasonably beautiful spring day and tried to relax. 

Okay, can I stop thinking about this now?

So, the "radiation" is done. The full body scan discovered that maybe I shouldn't have held that pill after all (4 additional views of my hand and hip, only to determine it was my hand that was "hot"). My throat feels kind of funny sometimes, but a glass of water or lemon drop usually fixes it right up. I declare it "cancer for creampuffs".

I know that it sounded scary, but nothing "really" happened to me. I mean, it was mostly the fear, and on that level, I guess I have experienced cancer. But the treatments and surgery were really easy for me. I am certain that other regimens are not that easy, and I know that I'm a baby. I learned a lot about my patients at work and even a few of my friends. Fear is not your pet or motivator. It's just crap.

So on to the crafts, I say! I'm working on a hat (for me, selfishly!!) and a belly dance bra. I will get pictures of the other 3 hats I've finished and the 10-10-10 scarf. But some of them are birthday presents, so it might be a little late breaking news. I hope to get pictures of the recipients wearing their gifts. I've also got plans for a some jewelry for another birthday girl.

List of Fears

I have to start the low-iodine diet tomorrow to prepare me for the radiation dose in 9 days. This has meant I have spent the last 24 hours in a panic / denial. The internet is not your friend when you are in this mode. I know this, too, but couldn't listen to myself.

Fear 1. I will actually have radiation side effects like losing my hair. However, that does mean I can wear a turban, which might be pretty cool.

Fear 2. I will harm Mr. Awesome with my radioactive self. I do have a plan, but I forgot to enact it. I was trying to wean him from the shoulder snuggling, but I think I get more out of that than he does. I shall just have to be strong, and play with the fishing pole toy alot.

Fear 3. I will lose my sense of taste. Literally. It's supposed to mess with your saliva glands. Although I always thought I should drool less, in general I would prefer to be moist than dry. The remedy is supposed to be something about sour candy, and I do love LemonHeads and their boxes.

4. It won't work and I'll have to do it again. I guess "easy" radiation is still better than chemo / radiation, so I'll just have to make it work.

5. Which is why this fear is the scariest - I won't be able to follow the low-iodine diet, which will cause the treatment not to work. But I can. I like vegetables and meat. I can have more pepperoni in 9 days.

6. But see fear 3! It will taste like tin! But it goes away in 30 days, which could just make for the thinnest birthday ever.

Close call?

I'm kind of a head-in-the-sand type. I might prefer not to know. But I'm no longer allowed to do that, I suppose. I'll have to revel in my hypochondria, now that I'm a "cancer survivor".

Whatever. Last week, I had my hair cut and colored. Albert's new assistant is really pretty good at the head and neck massage. I even got a new (well, back to the original, but new if you've met me recently) color that was a pretty dramatic change. I was feeling good.

Two days later, I wake up with one eyelid covered in my ol' "psoriasis" rash that I used to get before the allergy people made me quit using every beauty product known to the market. Also, my surgery incision was kind of puffy and weird on the right side.

By Friday, I had convinced myself that it was cancer come back from the grave. I was touching my neck so obsessively, I massaged away the main swelling and ended up with a vague post-surgical tightness. That lasted all weekend.

Monday I started to believe it was an allergic reaction to the hair chemicals and took a bunch of Benadryl. I slept really well. My neck still felt tight Tuesday morning though.

Only Wednesday did I finally call the doctor to ask if this was normal. Now, part of the delay was that I couldn't decide which doctor to call. I ended up calling the surgeon. His medical assistant said, "Oh, no. That's not normal at all."

She also said the doctor was out, I'll check with him and call you tomorrow at work. I kept it together at work today quite well, I thought. Checked my cell phone a few thousand times in case she couldn't get me on the work line. Raced home and looked at the answering machine on the land line, which is of course where she called, and listened to her message that said to return her call.

Which I promptly did and got her voice mail. Then, I flipped through some magazines that came in the mail, turned on the tv and watched the end of some Bravo show, and ate a lot of dry-roasted peanuts.

She finally called and said that I could ignore the swelling, maybe lightly massage if it made it feel better. Oh. I was going to ignore it in the first place, but then ....