Lisa's Thyroid Cancer Blog

Home sick!

2012-01-11T08:59:00.000-08:00

OKAY. This is a crazy series of weeks. I got sick on Christmas with a bad cold/respiratory thing/fever. I was sick for about a week, also developing serious intestinal distress that has been hitting for weeks, on and off. This past weekend I was very sick with it and I've had to go to my G.I. doctor. My endoscopy was also put off because I have been sick and they didn't want to risk it (now it's on January 25).

So yesterday I came back to work, worked a lot to catch up, and still am not caught up.

Yesterday I also decided I must have some kind of awful cancer (the pre-cancerous intestinal stuff, the stomach ulcer, and the ongoing side pain coupled with terrible stomach virus or whatever it is made me decide this*). And I had to have my cancer doctor talk me down, which she was kind enough to do. I love her.

Then woke up at 4 this morning (that's nothing new), and my neck LOCKED up in the worst pain ever. I've had herniated disc problems before, but the problems usually affect my LEFT side. This was on the RIGHT. I couldn't move.

I had to stay home this morning and now I've taken three Advils. They are starting to take effect.

Whoosh. What a beginning to 2012!!!

* What I decided is that I have a "gastrinoma" or "gastrinomas."

Intestinal fortitude!

2012-01-05T04:37:00.000-08:00

I'm on my way to the GI doctor for preop bloodwork in advance of my endoscopy this Monday. They saw what seemed to be another polyp in September, so now they will look to cut that sucker out (and I suppose whatever else they see that's not kosher). Please wish me luck and think good thoughts. I'm a little concerned that I'm just getting over a cold, but my asthma doc is not overly concerned.

January will be a big medi-cathlon (tm). I will try to keep this page more updated because of that.

Two years!

2011-11-29T11:23:00.000-08:00

It's two years, plus, since my original diagnosis!! My, how time flies. Not much new on the thyroid front right now, although I guess another radioactive tracer might be needed at some point soon.

In other news, a couple of folks I know have recently received the same diagnosis I got just before my 36th birthday. Hang tough, you two, and know you can lean on me as needed.

Maybe I should call this "Lisa's Kvetching Blog"

2011-05-07T00:14:00.000-07:00

In 2009, the year in which everything seemed to get all wiggy (for lack of a more descriptive term) in the form of life-changing news about my bodily condition, it seemed the diagnoses would keep coming:

Obscenely high mercury levels? Check.
Thyroid cancer? Of course.
Life-threatening hypocalcemia as a result of the thyroidectomy? Sure.
Esophageal spasming that felt like a heart attack? Come right in!
Mysterious pre-cancerous growth in my small intestine? You betcha.

When the diagnoses started piling up, all within a few months of one another, I told myself, "Let's just get through this season and then we'll feel better." I told myself, "Aren't we lucky that we're finding this now, so we don't have to deal with this later? We'll get all the treatment over with and then we'll sail through our thirties."

This was not my first indication that I like to lie to myself.

Since that time, I learned of a few more medical oddities here and there. Oh, and I broke my shoulder pretty seriously and got lucky enough to take in a bunch of radioactive x-rays... I got some more of that delicious radiation during a barium swallow... and yet more after a fall on my head. (Heck, I don't even have a thyroid to absorb that shit, right? I kid, I kid. When I had the head x-ray, the guy didn't even put a thyroid guard on me; he actually seemed pretty annoyed that I suggested it.)

Anyway, I digress. That last paragraph's worth of digression was just meant to say that, over the year or so after my surgery, a few diagnoses came and went, but I kept telling myself that the big summer of diagnoses, the summer of 2009, was all over, and from here on out, I would be a healthier me.

In that vein, I recently started seeing a proactive oncologist as part of this quest (basically, someone who doesn't want patients to have cancer, and works with them to avoid recurrences). My oncologist took a pretty thorough medical history (Memo to self: WRITE a medical history and then HAND IT to the doctors at the beginning of each appointment. STAPLE it to their damn questionnaires that take 15 minutes and don't capture anything. Hmmm, I bet other people have thought of this before, people who aren't even professional writers. Well, why didn't they suggest it, then? Bastards.), and the item she felt needed most attention, of those listed above and several others, was the duodenal adenoma.

Off I went to her recommended G.I. doctor, who called me a "walking medical textbook," because of the medical history I'm sure she was sorry she'd asked for. I rattled off issue after issue as she sat taking notes. I am sure she doubted whether she'd see her next appointment.

She sent me for some tests, two of which I just had earlier this week, an endoscopy and a colonoscopy. Well, actually, she did the tests herself. The first results available to me are the ones she saw immediately: a 12-mm (I think) antral, gastric ulcer with heaped-up edges (that even sounds yucky), and a medium-sized duodenal polyp, which she attempted to remove in full. (The doctor who found this the last time had told me he removed it... either that was a lie, or this is a new adenoma; given the overall mediocrity of that doctor in general, and my desire to NOT be sprouting rare polyps in my small intestine, I'm going to say it was a lie.)

Now I'm waiting for my pathology reports, and trying to avoid the trap of feeling like I did back when I got all of those concurrent diagnoses, of endlessly waiting for the next shoe to drop in an endless supply of shoes. This seems such a reactive stance to take for someone who relishes being alive, and yet, there's so little I feel I can proactively do. Again, I am starting to feel as if a code to my body exists, but nobody has it... and yes, I recognize the defeatist tone in that statement. And I'm trying to avoid the pity-party that I tend to want to have for myself as I await diagnoses (although pity parties with wine and oysters are really fun - thanks, Jim!).

So, yeah, not much on the thyroid front to report, really. As I mentioned - or if I didn't - the tests this past February came out okay. I will, of course, keep you posted here in this blog, originally for that purpose, regarding anything of note related to my thyroid. I'll also let you know the test results, when I know them, from this most recent battery of tests. If you're still reading, I'd love it if you'd please think cancer-free thoughts for me!

intestinal interlude

2011-05-02T14:55:00.000-07:00

I'm preparing for a G.I. workup (tomorrow) to follow up on an adenoma found in the lining of my small intestine. I got that diagnosis the day after the thyroid cancer diagnosis, and my doctors all said to chill until the thyroid cancer was under control. Well, knock on my head (my head representing wood in this case), the thyroid cancer has been under control (as much gone as we can tell it is) for a year, and it's high time (past high time) to be dealing with this adenoma.

Think good thoughts for me, please. If you need me tonight, you'll find me either curled up on the couch, softly groaning, or in the place you'd expect me to be the night before my G.I. workup.

Cramps!

2010-11-12T03:34:00.000-08:00

Three out of four limbs cramped up this morning! That must be a hypocalcemic record for me.

I woke up with a terrible cramp in one of my calves and a normal cramp in the other. I have to stretch my legs in a certain way to make the cramps go away. Sometimes I leap right up out of bed to make the cramps go, although being launched from a deep sleep immediately onto one's feet on the bedroom floor can be jarring and can cause injury. Sometimes I stay in bed and try to make the cramps go away from some position I can achieve whilst already horizontal. I chose the latter today. All of this to say, in the instant in which I was 1) waking up suddenly, 2) getting into a position in which I could effectively stretch my legs, and 3) yelping loudly at Jim, I leaned heavily on my left arm... which then cramped up also! OUCH.

Good thing I called Old Dr. Thyroid yesterday (aka, my endocrinologist) and left a message with regards to significantly upping my vitamin D intake. It seems that no matter how many TUMS I pop, I'm always on the edge of leaping out of bed in pain. And that's just one of the symptoms of hypocalcemia that makes it clear I'm not absorbing this stuff. However, I think my vitamin D is pretty low, and the calcium won't do anything if I don't up the D.

Speaking of Old Dr. Thyroid, he tells me that my parathyroids will never come back at this point. That's a bummer.

Old Dr. Thyroid also wants to do another round of radioactive iodine, which I think I'm going to just do, and schedule it for January. On the plus side, it'll be nice to make sure in the scan that "Everything is Illuminated" (thanks, Mr. Foer). On the less-than-plus side, I may be running out of time if I want babies.

Well, I think that's everything. For once I actually beat Jim out of bed (the cramps). So now I'm going to sit on the couch and gloat until he wakes up.

Happy Friday!

It's been a while!

2010-11-08T05:57:00.000-08:00

Goodness gracious, where to begin?

It looks like the last time I updated this blog was way back in June. Since then, I've done a few things. I went to two amazing conferences, I broke my right shoulder in a way that quite removed me from my daily activities for several months, and I got married to Jim!

Of course, this is the very abbreviated version of the last nearly-half-year. Still, I'm not sure how to do such a sweeping update. Maybe a short, bulleted list? Updates are as follows:

My job is excellent. I like my coworkers and the work I'm doing. The company I work for treats its employees surprisingly well. I have a lot of responsibility, I'm being challenged daily, and I routinely get to dress up like an adult.
My friends are amazing. Old friends - wonderful. New friends - wonderful. Thank you all for being so present for me over the last year. And a special shout-out to a small group of women friends who I met a little more than a year ago. For the last year, they have been incredibly supportive. Thank you, ladies.
The wedding was absolutely everything I could have hoped it would be, and I am thrilled to be married to Jim. Thank you so much to all of our family and friends who attended! The honeymoon, in one of our favorite places - Bar Harbor, Maine - was as relaxing as could be.
On the thyroid front, my doctor is pressing to do another round of radioactive iodine, this one less potent than the last. He checked me in August and didn't see anything on my ultrasound, nor in my blood work, to concern him. However, he would like to treat me with iodine. He says it is an important part of the treatment puzzle. I will probably go through with it in January, once my vacation/sick days reset.

Those are some of the highlights for the moment. I will try to update again in a more timely manner.

Health-related update, with preamble.

2010-06-06T07:47:00.000-07:00

PREAMBLE

Hey, friends. I decided I have way too many updates for one blog post. If I were a more skilled, or more patient, blogger, I'd take the time to interweave the threads and leave you, at the end, feeling satisfied that you'd just read a coherent piece, created by one of the best writers you know.

However, it's Sunday, and I am spending the day with Jim and Sara, so I have to be careful not to blog the day away. Also, I'm afraid my skill level - which is obscenely high, of course - might just drive you away if you were forced to perceive it.

So, I'm just going to do a few updates, I think, with different kinds of information in them. As you can see from my descriptive title (right? Mad skills, eh?) this is a health-related update.

HEALTH-RELATED UPDATES

My calcium levels are still trending toilet-ward. I take many calcium supplements on a daily basis, and when I forget, the tingling in my limbs begins. The last time I was tested, the level was still "critically low." My parathyroid, however, *is* trying. My PTH hormone levels are also low, but low-low-normal, so there's something going on in there. Time will tell if I ever get my calcium-absorbing talents back, but at least they make sugar-free TUMS that taste like baby aspirin in the meantime. My endocrinologist wants to see me in a couple of weeks about these results, and I assume at that point he'll check out my (lack of) thyroid and make sure there's no garbage growing there.

However, my thyroid-stimulating hormone (TSH) level, apparently, is starting to regulate, and just in time, because I found out when I finally stepped on the scale for the first time since my surgery, that I'd gained MUCH weight. While I understand that weight gain happens when one doesn't watch what one consumes, the amount of weight I've put on seems excessive, and not in line with what I've been eating, as far as I can tell. I'm so pleased, though, that this weight gain is just in time for the summer, for my wedding in the fall, etc. Yay for weight gain at great times. Yay.

In other health-related news, I haven't been able to do Pilates because of some herniated disc stuff in my neck. I've started physical therapy for the related nerve issues, however, and it seems to be helping.

Finally, I have to have a biopsy tomorrow for another finding (not thyroid-related). It's endless. Wish me luck. The doctor who did the ultrasound said she was 99 percent sure it wasn't cancerous and I said, well, I've heard that before, but I'll take your word for it. I'm taking her word for it.

Stop with the excessive gifts. I promise I'll update my bog.

2010-06-06T07:33:00.000-07:00

Okay, folks, please stop sending me candy-grams and flowers and cards in an effort to get me to update my blog. I can't handle the volume of gifts with my small apartment. If you want to send me gifts in exchange for blog updates, please make them cash gifts.

*Whew.* Glad I finally said that.

Updates!

2010-04-07T01:08:00.000-07:00

Hi!

I haven't updated in a while, but I'm doing fine. Sure, it's 3:53 in the morning, but that just means my absolutely adorable dog woke me up and I couldn't get back to sleep. It's cool. It happens. Here's what's going on:

- I have a new, great job and I'm very happy about it! I wake up in a state of non-dread on a daily basis. It's so weird!

- We set a wedding date, this Autumn. The venue is tiny, so the guest list will also be tiny. We're excited! We also booked a kick-ass honeymoon.

- Jim's great. The doggie's great (except for the gnawed-at portion of her tail). My family is great. Jim's family is great. Everyone's great.

- My next check-up for the thyroid cancer is not until August, but I've been active in other ways, vis-a-vis my physical health. As of about a month and a half ago, I've been doing Pilates once or twice a week with a super instructor, I have been walking as much as possible, and I just went to acupuncture for the first time last night. Wooo-wooo! As soon as I get around to filing the paperwork with my doctor's office, I'll be joining the gym in my new super-cool workplace.

- I'm going to be doing some more improv soon (way to announce that intention, Lisa)!

That's the news for now!

Sometimes it's nice to know you're right.

2010-03-06T12:51:00.000-08:00

I have to say, it's very, VERY comforting to know that I am right about my health now and again. Even when the results are concerning, it's nice to know I am not crazy.

I have been struggling for months - more than I have in the past, I suppose - with exhaustion, depression, chronic crankiness, my weight, headaches, klutziness, memory issues, etc. Well, I finally got my blood work back and - surprise, surprise - these symptoms are actually caused by real things!!

Yes, folks, that's right. While you may think I'm crazy - and I am, so you're right - you're also wrong, because my symptoms are based in medically proven reality. I am still hypothyroid and I am still hypocalcemic. I have been placed on a higher dosage of Levothyroxine (synthetic thyroid hormone) and 2,000 mg/day of calcium + vitamin D.

Symptoms of both of these deficiencies include those listed above, as well as others I won't burden you with right now.

Can I get a HA!?!

For now, health-wise, that's all the news there is to report. On the cancer side, the blood work looked fine, and I don't have to get tested again until August/September.

And, while I have a bit more news for you, which is not directly related to healthcare, but is also related to my being right about stuff... well, that news has to wait a while longer!

another day, another bullshit

2010-02-18T15:35:00.000-08:00

I think I am hypocalcemic again. When my calcium gets low, I get... well, the word one might use, if one were being a bitch-ass, would be crazy.

Or it's just very bad PMS.

I did get my blood levels tested, though, so I guess we'll find out soon enough.

"pristine" and random free association

2010-02-16T20:11:00.000-08:00

Pristine.

That's what my doctor called the ultrasound. Yay.

I don't have to get my thyroid rechecked until the late summer or so... and then I'll have a body scan with radioactivity... I think. Because I haven't had enough radiation applied to my body.

In addition to the ultrasound, I have to have my blood work (I've been remiss) - and then I will update more/again/etc.

Well. I'd better get to bed.

Oh, before I go, the promised free association:

LOST is stupid this season.

I like yogurt.

Roger Ebert looks so sick and I feel awful for him and all the more worried about me in light of his condition.

Oh. And? I fell (for the third time in a few months) today. I fell trying to get on the subway. The subway driver was kind enough to open the door so I could get my legs out before closing it again and leaving the station. My elbow hurts.

And stuff.

Tonight

2010-01-28T20:46:00.000-08:00

Tonight I looked in the mirror and I was movie-star thin, with eyes and ears that were too big for my elfin, waify face, and I turned sideways and I disappeared.

No.

I am getting no sleep. I have my three-month follow-up since the radiation in the morning. I'm trying not to be stressed about it, but I'm also not sleeping. Soon it'll be time to take the drugs... although I have to get up early...

Eek.

Status update.

2010-01-12T09:27:00.000-08:00

Hi Folks,

I'm blogging on my lunch break (such as it is), so this will be necessarily brief. I just wanted to let you know the latest:

- Thyroid-wise: I continue to await my first post-radiation follow-up. By "await," I mean "need to schedule." I will let you know when that is, and what the result is. (Don't worry, mom, it's not even supposed to be until the end of this month/beginning of next.)

- Other-physical-stuff-wise: I've been going through some diagnostic testing to ensure that some other concerns identified over the summer aren't awful and/or immediate. One of them, an ongoing health issue I've dealt with, seems okay at the moment (yay), with the proverbial "keep an eye on it" stamped upon it (I suppose the status has to be proverbial, as one can't really stamp anything on my internal organs without a laser or branding iron). The other issue, a precancerous finding in (and summarily removed from) my small intestine, also seems to be maintaining its status quo at for the time being, in that the doctors, so far, don't see anything else precancerous there. I had an x-ray with some yummy barium drink, and assuming the radiology doctor's findings don't differ from my GI doctor's findings, I'm golden at least until the next follow-up test, whatever it may be.

- Mental-stuff-wise: I went through a very trying couple of months around the time of the radiation. I was depressed and anxious, moreso than ever before. Whether it was caused by physical challenges, stress, or a combination of the above, a variety of remediations were applied and seem to be having the desired effect. I'm very much better now and I commented to Jim yesterday that on the way home from work, I experienced this sustained feeling that I couldn't pinpoint at first... and then realized it was happiness.

Well, that's all the news from the front, and it only took me 10 minutes to type... surely a respectable lunch break. Thanks for the positive thoughts. Please point some positivity at my doggie if you'd be so kind, as she goes in for dental work (i.e., goes under anesthesia and possibly has surgery) this Friday. She is the love of my life, as everyone in my life knows, and I am praying that she comes through with the flyingest of flying colors.

It's 12:33 and all is well with my cancer.

2009-11-20T21:33:00.001-08:00

I am cancer-free!!! The radioactive iodine scan found that there was only a small concentration of normal thyroid cells left over, and all in my neck, and they've all (in theory) been obliterated. I go back to the doc for a checkup in January-ish.

I returned to work after disability and then a quick trip to Florida for a wedding on Tuesday. Catching up is a weighty task.

And I am awake most of the time now.

And I can't stop my brain.

What to do when you are radioactive.

2009-10-31T09:56:00.000-07:00

1. Have a pity party. It's Halloween, and it appears to be a gorgeous, warmly autumnal day, but you can't go outside. Well, you could go outside, but you'd have to make sure none of your child-ridden neighbors approaches you because you can't go near their children. Pregnant women are a no-no, too.

2. Try to play on Facebook, only to discover that, as it has been since yesterday, it's still broken. Every time you try to use it for any of its regular Facebooky wondrousness, you get booted out and have to attempt to log in anywhere from one to four times.

3. Eat cheese. To eat cheese, you must acquire it from the out-of-doors. Have you acquired cheese from the out-of-doors? If no, whine because you have no cheese and wonder how you can get cheese delivered. If you do have cheese, eat it!!

3.B. For fun, create a recipe for radioactive cheese.

3.B.1. Recipe for Radioactive Cheese

1 portion Seal Bay Tasmanian Cheese
1 plastic spoon

Place Seal Bay Tasmanian Cheese (from HEAVEN) on plate. With plastic spoon in right hand, scoop out small portion of cheese. Raise spoon to mouth and lick spoon. Repeat until only one half of the original portion of cheese remains. Your remaining cheese is now radioactive cheese.

This is a versatile recipe that works on anything you can think of to mix with your radioactive saliva!

4. Realize that the Internet can't change your life.

5. Think about cleaning up the apartment, which could be featured on one of those news stories (AP Brooklyn, NY - Police today seized a basenji/pit mix dog named Sara when they realized her people were major fucking slobs, despite the dog's protests that the vacuum really only makes her worried and she's better off without it), and then realize you actually probably shouldn't clean because you should touch only whatever you have to touch.

5.B. Worry that you are making your computer radioactive, despite the latex gloves you're using.

6. Have another pity party because you REALLY miss your dog, even though she is loving life at her grandparents' house.

7. Obsess about work.

8. Do some writing.

9. Shower, while worrying that you are nuking the neighbors.

10. Restart your computer again. Try Facebook again. Curse Facebook again. Cry. Hate.

11. Think about the following: meditation, writing, reading, watching a good movie.

12. Drink.

I love this blog.

2009-10-24T10:46:00.001-07:00

http://charlcie.blogspot.com

***

Insert complaining here.

2009-10-23T02:37:00.000-07:00

My friend asked me in an email whether this blog had outlived its usefulness (yes, D., you) and I realized that I'd forgotten to update it with all the latest gossip. See, what happened, in case it wasn't clear, was that I went back to work after my hospitalization(s). And work laser-gunned my brain and I forgot I had a blog.

Here is the latest, then.

I have been on a low iodine diet for a couple of weeks. On Monday and Tuesday mornings, I go to the hospital to get Thyrogen injections, to stimulate the thyroid cells still hanging around in my body (I imagine they are old, Jewish women, with dyed hair and cigarettes... they are hanging around my body and gossiping... What will they do when stimulated? Will they scream "Oy, I've nevah BEEN so STIMULATED!!" Because that's what old, smoking ladies do, isn't it?).

On Wednesday morning, they admit me to the hospital for the radioactive iodine scan - and I guess the ablation - itself. They'll look for those old lady thyroid cells, and then whoever sucks up the iodine because she's stimulated is going to get hit with the radioactive stuff. I'll be in the hospital for a few days.

Because life isn't simple, on the way to another doctor on Monday, I fell down a few stairs in the subway station. I messed up my neck so badly, every day is an adventure in neck-lockery. What's worse is that I'm such a stress-case, I work all day and then only sleep half the night, waking up with my neck even more torqued then it was the night before. At this point, I can't turn my head. I don't even have my laptop here at home, so I will have to go to work this morning, range of motion or no.

At least next Wednesday I'll get an enforced two or three day vacation in the hospital. Sure, the food will be crap. Sure, the days will be boring (I don't even think I can bring electronics, for fear I'll irradiate them with my hot self)... but when I'm lying in bed at 3 a.m. and thinking about work, and my neck locks up because I had the audacity to move my head, at least I'll know I'm just a call button away from... an unnecessary spinal MRI.

Battlestar Galactica the THIRD

2009-09-07T00:19:00.000-07:00

Well, so I'm still awake. Earlier today, I was wiped out from a walk and figured I'd be asleep on the couch by 9pm. Now it's 3:17 and I am still wide awake and I just had a snack. I'm going to blame this on the absence of a thryoid, I guess.

This is my third episode of Battlestar Galactica in a row since Jim went to bed. It's getting silly. I thought perhaps my anxiety-fueled sleeping problems were a result of my thyroid problems, or perhaps my job, which can get a bit stressy for me. Perhaps, though, my sleeping problems are a result of my

BRAIN

!!!

I now return me to my Battlestar Galactica watching, already in progress. I'm drawing the line at three. Most likely.

Oh, YAY!

2009-09-06T23:07:00.000-07:00

Well, I am still awake and still paranoid, but the episode finally downloaded without my having to open up Jim's computer.

HOW WONDERFUL IS THIS NEWS?!

Here I come, o Galactica crew, here I come!

(P.S. I know it's just a show and it's not real.)

Great. I'm awake and paranoid and I can't even watch Battlestar Galactica.

2009-09-06T23:04:00.000-07:00

So, during my time off to have surgery, be subsequently hospitalized, and to recuperate, instead of reading books (I've read about 100 pages of a book), I've been watching Battlestar Galactica on the Apple TV. Jim engineered the whole Apple TV thing and now he's asleep. Meanwhile, I'm awake and paranoid and I can't sleep. Just now, I finished an episode, so I bought another, but I can't get it to load without using his computer, apparently. This is a problem because I don't want to open up his computer and try to use it without his permission. We don't do that stuff in this house.

BOLLOCKS.

Why am I paranoid, you ask? Okay, you don't ask, but I'll tell you anyway. I am paranoid I have other cancer. I'm going to spare you the gory details of this. I'd actually written them out, but for the purposes of not publishing said gory details on the Internet, I then hit the happy backspace key.

Suffice to say I'm not sleeping because I'm convinced I have all different sorts of cancer. And I can't watch Battlestar Galactica. And it's really exciting right now.

BOLLOCKS.

Sunday blahs

2009-09-06T10:18:00.000-07:00

Apparently, being grateful to be alive on a gorgeous Sunday with a holiday Monday immediately following does *not* preclude extreme crankiness.

Here's what my incision looks like today. I pulled the paper off last night. I'd had enough of paper (I know, that's the ONLY time you'll EVER hear me saying that).

Please refrain from commenting on my desperate need for a makeover.

Joel's Comic Life and My Blog Thoughts

2009-09-02T19:38:00.000-07:00

My friend Joel Arandia created some wonderful comics when he was diagnosed with thyroid cancer. I love these; what a great way to deal with a diagnosis like cancer. Here's a link to his series, Joel's Comic Life, located on his Flickr page, where you can see more of these:

http://www.flickr.com/photos/joelio/sets/935583/

Joel's comics have been making me think about how illness moves us. Since my diagnosis, I've been yearning to create stuff, in all of the different ways I like to express my creative self. I haven't had a huge amount of time/energy/space to do a whole heck of a lot of that yet, except for here, on my blog.

Blogs are seen as means of reaching out to others, and my friends and family have lately been commending me on my ability to reach out to others for support via my blog. And my blog is certainly a tool for that, inasmuch as being creative can include a reaching outward.

But creative expression has to start with - or at least must be composed of an equal element of - reaching inward. And I guess I want you to know that this blog, for me, is not just about me trying to pull you in for support. Rather, my blog is where I've been choosing to create, to vent, and to think. My blog is where I can meet you now, at these times when we are not together. It's also a great way of keeping you informed about my condition... and maybe one day will help other people with thyroid problems, too.

I do love the Internet for that.

Pathology is in

2009-09-01T13:28:00.000-07:00

I'm home from the doctor's office, where in addition to checking in with Dr. Lee about my hypocalcemia, I also got to hear my pathology results, some pertinent details of which are included below:

The tumor was 1.7 cm (about 1 cm larger than we thought), partially encapsulated, and malignant (papillary thyroid carcinoma, just as we thought)
30 enlarged lymph nodes from the midsection of my neck were removed, and all were clean (no evidence of cancer - WAHOO)
Parathyroid tissue was included in the pathology, which explains some of the parathyroid damage (still unsure whether it's temporary or permanent)
Based on my age and tumor size, lack of apparent lymph node involvement, etc., that places me at a stage 1
The tumor cells did not have any weird variations identified (in other words, I had standard-issue papillary carcinoma)
When I still had my thyroid, I also had Hashimoto’s auto-immune chronic lymphocytic thyroiditis (chronic thyroiditis/Hashimoto's thyroditis/etc.)

All of this is very good news. It seems* like they've got the cancer and we'll be following up to make sure with radioactive iodine treatment and scanning. I will be having the radioactive iodine treatment once I recover, most likely in October (probably the first week or two of the month, right after I see Sufjan Stevens in concert!!).

Even the Hashimoto's disease diagnosis was excellent to hear, because I've been having symptoms of thyroid disease for YEARS, and since about 2004, I have suspected they were thyroid-related. In 2004, I went to an endocrinologist to get to the bottom of my exhaustion. I had all of the symptoms of hypothyroidism and a few symptoms of hyperthyroidism to boot, here and there. Still, my tests came out in normal ranges.

Over the last year and a half or so as well, I've been gaining weight and swelling up with water in such weird ways, not in proportion at all to the amount of exercise I as getting. As I wondered why, I kept hearing hints that perhaps I as just getting older and had to watch my weight better. While I agree with that assessment, I also knew something was up.

And I was proven right - that I do suffer from thryoid disease - when they tested my removed thyroid. It saddens me to realize that I probably wouldn't have been diagnosed by my current endocrinologist had it not been for the cancer finding; my surgeon, however, preliminarily diagnosed me with it before he even saw the test results. Because he's a genius and I love him.

Ah, well. At least they caught it all - and I'm relatively young. Many women have to be in their 40s before they find out what's really wrong with their thyroids.

So I'm glad on all fronts at this point. More blogging soon.

* If they didn't get all of the cancer, we'll find out as a result of the iodine scanning in October.

Agenda for tomorrow

2009-08-31T21:04:00.000-07:00

Well, I'm home from the hospital (BIG yay for that). Hypocalcemia bites. I was hospitalized on an emergency basis at a local hospital. I summarized the incident in a recent post, but I'll probably write a lot more about it when I can stand to do so. That time is decidedly not yet.

Meanwhile...

Tomorrow I visit with Dr. Lee for a check-in, a couple of weeks early in light of the hypocalcemia episode, and also to see if my pathology results are in (they took out the thyroid and a handful of other glands - handfuls of glands! haha! - and sent them for testing to see how much spread there had been from the initial nodule in the thyroid itself).

In our chat on the phone today, by the way, Dr. Lee explained that they had not removed my parathyroids, but they'd seen them and they'd had to peel my thyroid apart from them - so they could definitely have been traumatized, which could have caused Lisa's Hypocalcemia Incident of Ought Nine.

I know I should, but I can't get used to not having had a detailed ultrasound of my entire neck (rather than just the front/thyroid area) before the surgery to see if the spread had been more extensive within my neck than what they saw. Logically, I know the following:

They believe they caught the cancer early
The iodine study will catch anything else anyway - and then a decision can be made about whether to yank more nodes through a more detailed surgery
If there was significant lateral nodal spread (I just decided that was the technical term for it without consulting the big thyroid book) that couldn't be dealt with via iodine alone, they'd likely need a second surgery for it to avoid the trauma of dissecting my entire neck at the front, middle, and sides

So then why can't I stop obsessing...? I think my mind needs something to pick apart at all times, lest it get lazy and relax or something.

And in other news...

I am sad that I couldn't try G's homemade soup; she had been planning to cook for me on Friday when all this ER business went down.

Spending time with a friend, who is also a professional chef to the stars and is planning to cook a health-giving soup for you is something not to be missed... but I missed it, because G (whom I hadn't seen in person in about two years or something ridiculous like that!!) showed up on Friday, just in time to help me unload the ingredients for the soup and then immediately haul into the cab with us for the ER trip.

What a wonderful friend she is, though. Just that short time with G made me happy. I hope the time together made her at least a little bit happy, too, because in addition to being out some nice ingredients (which she left for me, but I don't know how to make the soup), after two years of not seeing me, she suddenly got to see me feeling horrible. I was almost out of calcium, which caused me great physical discomfort and caused cloudy, irrational thinking, I realized later.

So basically, I was acting like the usual anxious and irritable version of me when I'm stressed out, except multiplied by a factor of umpty-shitsticks. When last she saw me, I looked like the village loon, freaking out vocally about catching simultaneous H1N1 and MRSA in the hospital emergency waiting room while concurrently getting angry with Jim for not being able to anticipate exactly what I was thinking and then take the only right action based no no input from me.

Ah, well. I hope to lure G back over here to cook some soup one day soon. While I have the ingredients, and she said she'd give me the recipe, I'd have to make Jim cook it or wait until I felt up to standing around and cooking, which I don't yet at the moment. And Jim's been such a saint, I don't want to make him cook me soup in the summertime (G was volunteering, after all).

So perhaps I'll just lobby for a date with G when I'm functioning again, send back the non-perishables and eat the perishables, which happen to be a few deep green things. I do love those green things, which is a plus. And at least I still have the gorgeous flowers G brought. They are absolutely incredible. I just wish I'd thought to bring them to the ER so I could have had them in my hospital room. Then again, I would have done a lot of things differently if I'd known what was in store on ER night...

But that's another story for another blogging day. Or for two hours from now, when I'm still wondering where else the cancer could be and simultaneously not sleeping. We'll see what happens.

Home = happy

2009-08-31T11:59:00.000-07:00

I'm home!!!

2009-08-31T09:34:00.000-07:00

I just finished a three-day sojourn in a local hospital. In the end, it wasn't nearly as bad as it was in the beginning. I was hypocalcemic to the point where I was not in my right mind, and the ER visit/first night were, shall we say, traumatic at best.

The first thing I did as soon as I got home was cuddle with my doggie, and then I took a long, hot shower. Now it's off to blow-dry my incision, eat a delicious lunch, and start making follow-up calls regarding the prescriptions I need to fill and the doctors I should be seeing this week. I think I need to take calcium again soon and I'm damn sure not going to forget it.

I am so thankful at the moment for the Internet, because it enabled my incredibly supportive group of friends and family to rally around me during some extremely panicked moments!

xoxox

Wrong number

2009-08-28T10:53:00.000-07:00

Well, I couldn't get anyone on the phone because I was calling the doctor's secretary's direct line, rather than calling the endocrine/pancreas center directly. That'll learn me. When I finally got in touch with a nurse, she was a great help, and she sent me for a 'stat' calcium blood test to ensure I can make it through the weekend. Just got back - came home to a wonderful card full of iTunes gift certificates from my work team.

Will keep you posted.

My doctor's office doesn't really exist

2009-08-28T07:47:00.000-07:00

I'm feeling like my lovely and well-appointed doctor's office, complete with its people and desks and air conditioning, was a movie set. They've packed it in and moved on, perhaps to a movie hospital somewhere else...

We can't get anyone on the phone.

Not to be dense or anything...

2009-08-27T23:25:00.000-07:00

Nurse: "What do you weigh?"
Me: "A lot. 1(edited) something, I think"
Nurse: "Well, 1(edited) what?"
Me: "I don't know my exact weight."
Nurse: "You need to tell me."
Me: "1(edited) *something* - I don't know anything else."
Nurse: "I need to know for anesthesia purposes."
Me: "Well, that's the best you're going to get because I DO NOT KNOW MY EXACT WEIGHT."

Finally she weighed me. Wouldn't that have been the simpler route? The whole way to the scale and back, she kept trying to explain how important it was and why I should have been comfortable telling her. When we got my exact weight, she gave me the "there, was that so hard," treatment. The only thing that had been hard, however, had been convincing her that I DID NOT KNOW IT.

Fast-forward to the OR as I'm getting situated on the table. They review my weight with me and I confirm it.

Anesthesiologist: "You really weigh 1(edited)?"
Me: "Yup."
Anesthesiologist: "Wow. I thought that was a mistake on your chart."
Anesthesiologist resident: "Yeah, you don't look it."
Me: "Well, that's flattering, but she just weighed me and I saw it."
Anesthesiologist: "You must be a very dense person. You're denser than anyone I've ever seen. You can't possibly weigh that much. I really thought that was a mistake."
Anesthesiologist resident: "We'll just say 1(edited and rounded down) because I think the other thing is too high."

Great. I'm dense and I'm fat.

Not sleeping

2009-08-27T21:11:00.000-07:00

On the plus side: I'm no longer having a meltdown.

On the not-so-plus side: I'm still suffering the effects of hypocalcemia, calcium pills, vitamin D, and all. I'm awake at 12:03 AM. I had fallen asleep on the couch. Tried to make the transfer to bed an hour or so ago and found myself there, wide awake again.

I'm still vibrating - legs, hands, sometimes my face. I guess they bumped my parathyroid around something fierce. I feel like there's a generator behind my skin. The feeling of vibration (as opposed to tingling, which I also have in my limbs) gets so intense sometimes that I am sure one must be able to feel it from the outside, like a thrumming motor, although even I, when I place a hand on my vibrating limb, can't feel it with that hand.

I'm wondering if this is the painkiller wearing off. I downed a small can of Sprite (one of those hundred-calorie deals) because I felt SO thirsty, but it made me nauseous, so I got up. I am not sure whether that's the effect of the painkiller, too, although I'd eaten sufficiently when I took it.

I'm noticing my body is not reacting to food as I'm expecting it to. This could be because I stopped taking my Aciphex today on the orders of nurse mom because it interferes with calcium uptake, at least until I talk to the doctor yet again in the morning (his office opens in 9 hours).

I expected the Sprite to settle my stomach: it didn't. I keep getting hungry craving creamy, cheesy things (calcium-rich, I guess), but then feeling gross and full after I eat them. (But don't worry, I'll manage to gain weight.)

hypocalcemic meltdown

2009-08-27T14:06:00.000-07:00

I'm apparently suffering from hypocalcemia.

I'm vibrating and tingling and it feels crappy. My mom is giving medical advice to Jim for me because I don't want to listen because I'm having a meltdown.

I take Aciphex and apparently it counteracted my calcium. I just got another prescription, too, for Vitamin D.

I'm also having a meltdown I weighed myself and I weigh 7 pounds more than I did on this scale two days ago, 4 pounds more than I did at the hospital, and 20 pounds more than I did at the beginning of last summer.

Mom's telling me to remember that my hormones are all out of whack, but I've got to say, what the hell?!

My incision today

2009-08-27T10:52:00.000-07:00

Yay! I've showered!

I'm home!!!

2009-08-26T17:27:00.000-07:00

Okay, so I'm really tired, and I have an annoyingly painful case of the hiccups - but otherwise, I'm feeling GREAT! Thanks, Dr. Lee! :-)

As you can see from the picture, I'm home, minus one thyroid and several suspicious lymph nodes.

I'm going to have some soup soon, and then go to bed. I'll post more tomorrow. In the meantime, thank you all, my friends, SO MUCH. I can't imagine how much of a difference experience this would have been without your love, support, prayers, notes, thoughts, kindness, etc. I can't believe how many wonderful people I'm surrounded by. What an amazing thing to find out.

With love and gratitude!!!

Lisa

Off I go to the hospital

2009-08-26T03:15:00.000-07:00

Leaving in 45 minutes (eek). The surgery's at 10am. If you want to know about my condition and you know my cell number, you can call late in the day (or one might say evening). You can also call tomorrow. I'm not sure whether I'll be there overnight or not.

Thank you to each and every one of you who has written, called, seen me, and kept me in your thoughts. It means the world.

Believe it or not

2009-08-24T20:05:00.000-07:00

One thing I like about today's doc (I like a lot about him) is that not ONCE did he write off all of my many symptoms as coincidence - or any of them.

He agreed with me on this: while hoarseness is a symptom of nerve spread (I think), I said I thought it was actually due to acid reflux. He said, "yes, you're probably right, that's probably from acid reflux." Or some such.

However, he did not pick out a SINGLE symptom and say "yeah, that's just incidental..." Or "that's an interesting coincidence, but they're completely unrelated." Or "I think you're wrong."

In fact, he thanked me for bringing things up, even if they were weird.

In fact, he says he thinks I've got Hashimoto's thyroiditis, which progresses from showing very little on the TSH results to eventually producing wonky levels (I think - still learning about it)... which could be why I've been having symptoms for several years intermittently (and others steadily).

In fact, when I brought up my difficulty regulating my weight, at no point did he say "well, as we get older, we have to learn to control our portions." Instead, he encouraged me to think I'll be able to regulate my weight, finally, once I get my TSH levels steady and I'm taking synthetic thyroid (I HOPE SO - AND I HOPE IT DOESN'T REGULATE UP!).

Now, don't get me wrong, I'm thankful for the referrals from the endocrinologist who was responsible for helping discover the cancer, but I'm still going to seek someone else after the cancer treatment, because the best I got out of my endocrinologist was that my symptoms could point to thyroiditis, but didn't require medicine.

Eh? As it progresses, Hashimoto's obliterates the thyroid. I think I'd prefer the medication. What I don't get is that, assuming I didn't have cancer, she was just going to let me be sick - because she didn't identify that I even had thyroiditis, only the symptoms, and she felt that while I might have this collection of symptoms, they didn't mean enough for medication.

This is what I'm trying to explain when I say we need to advocate for our own care. We have to push forward and know that if we don't feel right about a diagnosis, we can look elsewhere, that other doctors may - and do, and will - have other opinions that feel better to us.

Yes, I like to hear that something (not my crazy mind) has been causing these weird symptoms for the last few years. It's so simple, really, for a doctor to win my heart. All s/he needs to do is: 1) be one of the best in the field (go Lisa's surgeon!), and 2) listen and not tell me I'm wrong (see previous parenthetical).

That's really all I ask.

I found my surgeon - surgery on Wednesday

2009-08-24T17:15:00.000-07:00

Today's consultation with the surgeon went very well. In fact, I have a surgery date, assuming that what I'm feeling in my neck/throat/glands is not the beginning of a cold! I'm scheduled to go under the knife on Wednesday of this week at Columbia-Presbyterian Hospital, waaaaay uptown enough so as to be Harlem, I believe. Apparently, I won't even have to stay overnight in the hospital unless they feel the need to keep me. The recovery (before I move to the radioactive iodine phase) will be about a week, I'm told.

More tomorrow.

Pristine necks: get them while supplies last

2009-08-24T03:26:00.001-07:00

Today's agenda, plus anxiety

2009-08-24T02:41:00.000-07:00

It's 5:30 AM. At 8:30 this morning, I have a consultation with a thyroid guy at Columbia University Medical Center (or whatever that medical center is called). From his resume, the guy looks to be exactly my age, which is a little odd, but he seems to be an expert in thyroids and the endocrine system.

This morning I've been worried about it being in my lymph nodes elsewhere, although I -

YIKES! Watching the news and a wave (sent via Hurricane Bill) swept three people out to sea - I just typed "see" - a little girl died and two were rescued. The wave was in Southwest Harbor, Maine, at a platform in Acadia National Park. We always stay right near Southwest Harbor when we go!! We've never been there this early in the season, though. Well, I have been there as early as July, but not Jim. Is this perspective-giving? Yes. Am I extremely open to perspective at the moment? Not extremely. Perhaps just somewhat.

Anyway, yeah, this morning I've been worried about cancer being everywhere. I'm not sure how I got this idea in my head. I guess maybe that's just what happens when you mix cancer with a paranoid/anxious person who is up suddenly, and too early.

So I have to remember to ask the doctor this morning how they can make sure it's not everywhere.

Also, what Jim and I call my "brain worm" has been super-insidious lately (meaning I can't remember shit from moment to moment). I forgot what cerignola olives were called for nearly 24 hours until I looked it up with a Google search on "what are those big Italian olives with the pits called." I'm going to hope that effect is produced by anxiety.

Also, I've had pain in my body elsewhere, corresponding with lymph node locations. Also, that other pain I mentioned is still hanging around, too.

I just coughed and it hurt my neck.

Can't wait to get coffee and stop the progression of the paranoia.

Thyroidoke

2009-08-22T22:29:00.000-07:00

Had a great night of karaoke and thyroid cancer talk tonight with my friend Joel, pictured. Note that he's displaying his thyroidectomy scar. The part of the scar that runs up the side of his neck is from the removal of a large lymph node that was also affected by his thyroid cancer.

Taking Control of Our Health

2009-08-22T07:34:00.001-07:00

I was having an email conversation with a friend of mine this morning (I'll call her C), who is complaining of some scary-sounding symptoms that she thinks could be thyroid-related. She has had much trouble finding a doctor in the Boston area to take her seriously, one who will offer her a consolidated picture of her care and embrace evidence that is perhaps less than empirical. At the same time, she's been doing what I have done in the past, what I'm trying not to do as much going forward: forgetting about a recurrent pain when the pain stops, and remembering it/getting worried again when the pain starts.

I'm sure one of the reasons we do this - we forget pain the second is gone - is to take care of ourselves. We tell ourselves that, since the pain is gone, nothing's broken. And if it ain't broke, we think, there's no need to fix it. Until the pain starts again, weeks or months later.

My recurrent thyroid pain - which I thankfully remembered to mention to my primary care physician, and which my doctors are still fairly certain is not actually thyroid pain - is what motivated my primary care physician to order thyroid blood tests. When those came back with a slightly abnormal result, he sent me to an endocrinologist, who felt there was nothing wrong but tested me anyway, in the name of being thorough.

I was very fortunate all around. I was fortunate my endocrinologist decided to be thorough and do a preliminary ultrasound. I was fortunate she ordered tests beyond the standard TSH and found elevated antibodies and thyroglobulin (tipping her off something might be wrong). I was fortunate that, even for the small nodule she found, she sent me for a biopsy. Ultimately, I was fortunate that my first blood test result came back abnormal, otherwise I'd probably not have made it to an endocrinologist at all.

I'm interested in the big picture of my health. I have had thyroid-related symptoms for the last four years, pain on and off for about two. The first endocrinologist I went to told me I was normal, so I accepted that. Would things have been different had I continued to investigate?

My experience over 10 years ago getting diagnosed with Arnold-Chiari Malformation, which I was told was an incidental finding and nothing to worry about (and which had actually been the source of my lifetime of headaches, as well as other mounting symptoms in my early 20s), taught me that I needed to take charge of my health. The Chiari experience taught me that I needed to learn my diagnoses and make sure that I was comfortable with what the doctors were telling me, that I was the only person who would or could advocate for me, because I was the only person who knew what was going on in my own body, regardless of what the doctors told me they thought was going on.

Now, here I am again with a diagnosis (thyroid cancer) that I'm attacking. The small bowel adenomas I found out about this past week will also need to be examined. The pain I've been having elsewhere will need to be addressed, too. Here I am writing about this in the passive voice, but I know that I am the one who will need to be in charge of learning about these conditions, that I'm the one who has to take control of my care, my body, my own health.

As a woman, I have a problem with listening to doctors, male and female, telling me I'm wrong about how I feel. I'm going to stop doing that. I'm going to stop ignoring symptoms, stop ignoring my instincts about my body. If a doctor expresses doubt, I'll gently disagree and keep moving forward, asking him or her to put aside those doubts and get me the care I need. If a doctor tells me I'm wrong, I'll find another doctor. In the grand scheme of things, I'd rather offend a doctor than miss something.

In that vein, I'm also going to keep pushing for a consolidated care model for my self, in which my doctor knows what's going on with me at all times. So far, my primary care physician has the whole picture, as I keep him posted on everything. He's a very thorough, caring doctor. I hope that he and I can take the first step together in my newest experience of being in charge of my health.

I will not forget that I'm the only one who can manage my care. And I hope my friend C will embrace this approach, too. Let's stop ignoring ourselves. We are too important to ignore. Let's care for ourselves - and recognize that we, above all others, are responsible for that care.

A&P Addendum

2009-08-22T01:40:00.001-07:00

As I read it, I'm making Western practitioners sound like bad guys. I've actually appreciated the care I've been getting lately, which has been incredibly thorough. I adore my primary care doctor, and the doctors around me have been, for the most part, extremely vigilant. If I'm honest, a lot of the accountability when anything gets missed - when I'm paranoid and yet don't follow up, etc. - has to rest with me. Only I'm in this body. Only I know my pain.

A&P (Awake & Paranoid)

2009-08-22T00:59:00.000-07:00

I have to confess that on most (if not every) night since the diagnosis, I've taken a drug to help me sleep. I did not take it last night because I was going to bed late and feeling super sleepy - also, because I had a race in the morning (a 5k, my last of nine I wanted to complete in 2009).

Some massive thunderstorms have now hit (it's 4am in these parts) and my dog feels that it's necessary to be awake and pacing, leading to me (her mom) being awake, too. Jim gamely attempted to come out to the couch himself, but usually once this happens I'm pretty much awake.

This thyroid diagnosis, along with other bodily woes, is weighing on my mind now. While this is my first experience of having cancer (and, I hope it's the last - over the long, long life that I endeavor to live), it's not the only really disturbing health scare I've had, not the only set of symptoms I struggled with until a diagnosis was made, and not the only time I've fixated on my health. While I hate the idea of being "sick," when I am sick, I do tend to become extremely vigilant and knowledgeable about my condition, which is something of a positive, I guess.

So on Wednesday, T+1 (thyroid diagnosis date + 1) another doctor (separate to the thyroid diagnosis) told me I had adenomas in my small intestine - what he said were rare and precancerous growths (rare to have them in the small intestine). He told me to worry about the thyroid first and then to follow up with him for more testing (but who can say if it'll be helpful) maybe in a year or two. The conversation was quite discouraging - he made these growths sound both destined to be cancer and simultaneously extremely rare, undetectable, and beyond scientific knowledge when they occur in the small intestine. I was later corrected, told that adenomas are benign until they turn into something else, which can take forever and can happen never. So that comforted me a bit, but I'm still going to follow up before a year or two has elapsed. I'm getting varying stories from people about these things. It's good to know in the short-term I'm not the ticking time bomb I thought I might be.

Elsewhere in my body, I'm experiencing another pain tonight. Those who are familiar with my somewhat substantial history of medical woes (four surgeries so far in the life of this 35-year-old) might be able to guess at where that pain is. For now, I'll just say that I once had emergency, life-saving surgery on the organ system that's giving me pain. Given the whole thyroid thing, how I wouldn't let that go because I knew something was wrong, I'm feeling like I need to start actively following this other thing through, too. I would chalk this up to late-night paranoia (which surely plays a role), but this has been bothering me for a couple of years, on and off - and I've been worried, on and off, all through. I've been to a couple of doctors who said I was probably fine, but really weren't concerned given my age and overall good health. And then meanwhile, I have only worried while the pain was bad and then stopped worrying when the pain went away - which is sort of how I was with the thyroid, too.

I am tempted to follow this pain up as well, and be extremely tenacious, on the one hand. On the other hand, I'm tempted to shut this down, insist to myself that whatever it is probably has an explanation that is not cancer, and deal with the thyroid first. And yet this worry nags at me.

So tonight (this morning, actually), I wonder, can a little bit of a lesson be dangerous? If I know that my instinct was right on about my thyroid - that there was something wrong in tham thar thyroid parts, based on a knowledge of my own body, coupled with some obvious symptoms - it stands to reason I should listen to my gut more often when I have pain, coupled with some obvious symptoms. Further, I know that last time I had problems in this other area, I knew something was wrong - I just didn't know what to call it (by the way, it wasn't cancer).

And yet, what if my gut is paranoid (in addition to containing adenomas)?

Oh, those self-sabotaging what-ifs!! Even as I write this, I know that it's wrong. How can body knowledge be thrown aside? Perhaps that's just the voice of evidence-based, Western medicine, coupled with a dose of my own (how you say? Skepticism? Insecurity?) responding to those crazy little things I have called instincts.

As I type away, outstretched as I am on the couch with laptop topping my lap, my dog has just decided the thunder has subsided enough for her to join me on the couch. She rests her warm chest up on my legs and then gingerly steps over them and attempts to both curl up and, at the same time, watch the window for signs that the storm might need her immediate attention again. After about a minute of this, the storm wins, she's off the couch, off my leg, and back to standing by the window, ears pricked up.

Perhaps I should take a lesson from her right now. It's great that she's so vigilant, but freaking out is certainly not helping her to get the rest she needs. Perhaps I don't have to pace and stare and stay awake, either, to be vigilant (aside from when my dog makes me). I'll call this other specialist on Monday to set something up and, until then, I'll try my best to let it go.

Pre-surgical Consultation # 1 - 8/21/09

2009-08-21T13:09:00.000-07:00

Pre-surgical consultation #1 of 4 scheduled. Saw a doctor associated with St. Vincent's Hospital. Notes below:

- Thyroid feels a little firm on the left side
- 1.5-2 hour surgery, overnight stay
- Pain probably not related to nodules (Lisa is skeptical)
- Iodine treatment 4 weeks post-surgery
- Exam one year later
- Removal of thyroid can cause calcium levels to drop - calcium supplements may be needed
- About a week of recovery/week out of work after the surgery
- Uncommon surgical result that they are very careful to avoid, but possible - temporary or permanent vocal chord paralysis
- Two or three enlarged lymph nodes that will need to come out most likely
- Small incision, 2-3 inches, center of neck - heals clean
- Should have the surgery in 4-6 weeks
- Surgery would be at St. Vincent's
- Dr. does "one or two" thyroid surgeries a week
- Observed some redness in larynx and additional tonsil tissue
- Surprised MRI was ordered - is okay with it
- In surgery - will remove right lobe first and then send for immediate pathology to ensure no mistake was made in the initial pathology assessment before removing the entire thyroid (called a "frozen section")

So it begins...

2009-08-21T09:27:00.000-07:00

Dear Friends,

On Tuesday, August 18, 2009, I was diagnosed with thyroid cancer, based on an ultrasound and fine needle aspiration conducted on Friday, August 14. The biopsy, of a small nodule on my right thyroid lobe, indicated papillary carcinoma. A number of other areas were highlighted for further exploration as a result of the ultrasound, including questionable nodules in the lymph nodes/parathyroid areas.

I'm sorry if you're finding out about it for the first time here on my blog. Please do not take it personally if you are. It's only been a couple of days since my diagnosis, during which time I've been trying to schedule many consultations and tests, and also get some work done at my full-time job. Hence, it's been difficult to let everyone know in a timely manner. I'm afraid, however, that if I hold out any longer so I can tell those of you I really want to call or email personally, I'm going to be "outed" any minute now on Facebook.

Again, then, my advance apologies if this is the way you're finding out. It doesn't mean I don't love you or want to tell you in a better way than this. I do.

Going forward, I hope to use this blog to keep in touch with you and give you updates on my medical status all at once. Because this is the most common question I've had since the diagnosis, let me first tell you the steps from here:

See a surgeon: Between now and September 3, I will have visited with four surgeons.

Get an MRI of my neck: Scheduled for Wednesday.

Run about from place to place, collecting results: Ongoing.

Schedule the surgery and the follow-up iodine therapy: Surgery will probably happen sometime in September; iodine therapy will happen 4-6 weeks after the surgery, assuming that my doctor wants to do it.

I will write more on my medical history, how I got to this diagnosis, and on the consultations as they move forward. In the meantime, more information on my condition can be found below, in some text from a really excellent message that Jim sent to some friends of ours:

"So, here's the news as we know it: Lisa has early stage thyroid cancer that may or may not have spread to the surrounding lymph nodes. (We'll get a better sense of this from an MRI next week and during the operation itself.) Treatment involves complete surgical removal of the thyroid plus any affected tissue, followed by radiation therapy. We're already meeting with various doctors and hope to get Lisa slotted for surgery in early/mid-September... It was caught early, so we've been told the prognosis for someone of Lisa's age/health is very good. We like hearing that sort of thing. :)"

That sums it up nicely, I think. Please feel free to contact me via phone or email if you'd like to talk - I would love to hear from you.

XOXOXO
Lisa