Wednesday, May 31, 2006

done good

I went last night to our monthly Thyca (thyroid cancer) support group meeting, and didn't get home until well after 10PM.

The meetings don't normally run so late, but we had a lot to talk about last night. One of our members has just returned from M.D. Anderson Cancer Center in Houston, and she looked fantastic.

This poor woman had been through the mill here in Phoenix -- her doctor was completely unresponsive to the problems she was having on her meds (she was on way, way too much Cytomel), and did nothing to help her pursue why she had positive scan results for both lung and breast infiltration.

So after listening to me rave about my experience there, she referred herself to MDA.

Her experience there was similar to mine: they did everything in a matter of days, things that had taken weeks or months here. She did have a longer stay (3 weeks), because her meds had messed her up so much, it took a while for the excess to leave her system, and she also went on the low iodine diet for a week and had a nuclear scan. In three weeks she had a complete diagnostic work-up, including the nuclear scan, and then had neck dissection surgery very similar to mine. (Poor dear, her surgery was even more extensive than mine -- 5 hours. Yikes.)

Still, last night, just two weeks post-op, she looked and sounded amazing. All the rest of us were so happy for her, it was like a party. She feels as if she is finally getting her life back! She is still impatient to get back to work and to "normal" -- but we cautioned her to take it easy (and to go to physical therapy!) before jumping back into work with both feet.

She told me: After I heard about your experience, I knew that they would take care of me there. I would never have gone if you hadn't talked about it. Thank you!

I don't think I did anything that extraordinary... I just show up at the meetings and help answer questions. But I remember when I was first referred to MDA and I was terrified, I went to a support group meeting and there was an MDA veteran there who reassured me that it was a good thing to be going there, and that helped me immeasurably. So I am very happy to have done the same thing.

I want so much for this experience to be over, to be done with cancer. But I can still be the "experienced patient" for the new people who are trying to deal with this. I'm sensitive to the fact that most people don't have the difficult experience that I had, but for those who do, it's nice to know I can help.

June's column

Let's Do Lunch, in the June issue of Low Carb Luxury's online magazine.

Sunday, May 28, 2006

a beautiful salad

I've always thought that salad tastes best when it's made by someone else -- regardless of what's in it.

Recently, though, I've overcome decades of laziness and adjusted my attitude towards salad. Inspired to frugality by the ridiculous expense of my iPod, I've committed myself to cooking very nice meals at home so we don't eat out so much. This commitment extends past the cooking itself, of course, into planning and shopping and such pre-prep tasks as washing lettuce and keeping a running inventory of what we have in the house, as well as a forward-looking menu plan subroutine running pretty much at all times. (I take my inspiration where I find it.)

I finally found a pizza sauce recipe that the children like, and so we've been having home-made pizza once a week. Pizza alone isn't the best of meals, but pizza with a salad like this is better than just OK. This week, the pizza was a reflection of the salad, loaded up with mushrooms, roasted peppers, and kalamata olives in addition to the standard pepperoni.

Is it a rut if you aren't tired of it? How can I ever get tired of this divine combination of tastes, and textures, with such delightful colors? I suppose one day I will. I change it up, of course, depending on what's on hand, and what's for dinner. The night we had sausage and peppers, I skipped the peppers in the salad -- and on clean-out-the-fridge night, I chunked up leftover chicken and added it to the salad, and the salad itself was dinner.

This particular version: romaine lettuce, cucumber, Roma tomato, roasted peppers with garlic, kalamata olives, sliced fresh mushrooms, grated mozzarella, and pepperoncini. The olives and pepperoncini give a kick start to the vinegar and olive oil dressing we add at table.

The whole thing takes maybe ten minutes to put together (having already washed the lettuce). The payoff is worth the investment.

Thursday, May 25, 2006

off the hip

Two down, one to go, times two, this busy week.

On the fun side: story time. It's going well, even though my throat hurts by the time it's over. Everyone seems to be having a good time, and several people have made a point of saying how happy they are that I'm doing it, or what a good job I'm doing. I even scored a few hugs from little ones yesterday, as well as a bevy of 'Thank you, Miss Joan's. Such little ones are (for the most part) really fun to be around.

On the less-fun side, doctor appointments. Monday was the ENT. He was relieved with the biopsy results and not concerned about the changes revealed in the ultrasound since I am going to Houston for follow-up in August. He did a thorough examination and declares that there is nothing structural going on in my neck that he could find that would give me that lump-in-my-throat feeling. Both that feeling and the feeling of tightness I get across the front of my neck (from time to time I feel like I'm being garrotted) are probably a result of the surgery. On the sinus infection side, he suspects allergies rather than infection, and gave me a nasal spray to try. Of course I haven't started it yet, because I am an idiot.

Yesterday I saw the dermatologist about the "spot on the spot." I've had a large-ish spot on my left hip since I was pregnant with DS1. (Pregnancy does all sorts of weird things.) While Dr T assured me it was a benign keratosis, I've still kept an eye on it for the simple reason that it's so big. And that's why I noticed a couple of weeks ago that it had developed a little black spot in the middle, which rang alarm bells. In the world of skin cancer, any change in a spot is bad.

Dr T took a look at it and hypothesized that it looked like a scab, but a scab that small wouldn't likely last 2 weeks, would it? And why would there be a scab there? I can't recall knocking it or scratching it, although I suppose I could have without remembering it. But this was a tiny dot pretty much right in the center, so frankly I am skeptical of the scab theory. I mentioned to Dr T that I checked my mole-mapping photo and the lesion had definitely changed. He was intrigued, and had never loaded up the software before, so we took it for a spin. After he saw the lesion in the photo, he decided to do a shave biopsy.

Amazingly enough, he did it more or less on the spot, saving me the time and trouble of having to make another appointment and come back again. Shave biopsies are quicker and easier than punch biopsies, since they just slice the whatever off at the level of the skin, and there are no stitches involved.

So now I've a bandage on my hip and I'm banned from swimming until it heals... and this weekend is Memorial Day! Bad timing. But I'd rather know what's going on sooner rather than later, so I'm not complaining.

Today: the dentist. My mouth is a mess. The sinus thing has lead to a lot of overnight mouth-breathing, and my teeth just do not feel good. I think I'll take some prophylactic painkillers before I go in. Here's hoping that nothing serious is going on. It would be just my luck to need a root canal or something at this point. (I'm not being defeatist. I've had a problem with my lower front teeth on and off for years, and we've been keeping an eye on one problematic area for a while, waiting for it to go off. Now may be the time. Whee!)

Later: My teeth are fine, even though the cleaning was excruciating. *whew*

Wednesday, May 24, 2006

dinner haiku

Delicious sausage
with pasta and sauce on top
Welcome to Heaven

-- DH

Monday, May 22, 2006

on the wheel

I'm a small furry rodent in a cage, and I can't figure out how to get off this damned squeaky wheel.

This was a long weekend, in most respects lovely.

Friday I took the kids to Borders for snack after school, even though I had just been in the morning with DS2 for storytime. No matter. Came home, and made pizza for dinner. I've finally found a sauce recipe the kids will eat, and so it's in the menu rotation now. It was good.

Saturday: Up early, took DS1 to the Y for his lesson but the teacher was out; crossed wires I guess, but I had left her a message to call and clarify things with me, and she never did: harumph. Began the laborious process of importing all my CDs to iTunes. Yikes. Early in the afternoon, scooted up to Scottsdale for the book signing of my online-writer's group mate Cornelia Read's first novel, Field of Darkness. Go, Cornelia! She's touring as the protege of sorts of Lee Childs, who is apparently a big mystery writer. Who knew? Not me, I'm not into the genre at all. Doesn't matter, except that Cornelia gets to talk to sizable crowds because Lee is well known. I didn't get to speak to her because I had to dash to DD's dance recital. Controlled chaos throughout, but it all worked just fine. Flancer's for dinner afterwards was perfect.

Sunday: Mass in the morning, Over the Hedge (I liked it) in the afternoon, more iTunes and laundry to get us to now.

This week: appointments with my ENT, the dermatologist, and the dentist; storytime x3; swimming lessons for DS2 x2. Plus the usual school pick-ups and drop-offs, but at least DS2's soccer season is over.

My throat hurts, my arthritis seems marginally better, and I took an elbow to the eye socket this evening by an inexplicable chain of events. Things could be a lot worse. In spite of the eye-whack-induced headache, I'm feeling pretty good.

Thursday, May 18, 2006

quick rundown

* I got the biopsy report, finally, and it doesn't say much of anything. Unfortunately there was no ultrasound report whatsoever. I'll ask my ENT about that.

* DS2 started swimming lessons on Tuesday, and wonder of wonders, he likes it. He must have cried, without exaggeration, six times about it before he actually went. Today, he didn't want to get out of the pool. He's actually swimming, too -- willingly putting his face in the water, jumping in, the whole thing. It's so cool.

* Storytime started on Tuesday. Tomorrow is the last round of Thomas the Tank Engine books and train songs. For the next two weeks, we're "going down to the pond," so I have to find some good songs that fit the theme. "Five Little Speckled Frogs" is on the list already.

* Gas is hugely expensive ($3.07 at the cheapest stations) and I've managed to burn through a tank in less than four days, what with all the extra trips to Borders and the Y. Yikes.

* Saw Dr. P, my rheumatologist, and she doubled my dose of Arava, since she started me very low. She also recommended taking Aleve if I'm in pain. She's the one person I'm supposed to whine to, when I'm not feeling well. I still feel guilty for doing it, though.

* DS2's last day of school was today. Today also included his swim lesson, taking DS1 to the Y for swim practice, and picking DD up after her dance class. Then, this evening, the older kids' "Spring Sing" and school open house, and the tech rehearsal for DD's dance recital on Saturday (I'm a volunteer/chaperone, so I have to attend these things.) In other words, a completely crazy day.

* Even though we've been really busy, I've managed to stay on top of the shopping and cooking (not so much the cleaning, though, although I'm good with the laundry...) We looked at the cash flow situation and decided that one thing we could at least try to do was cut down on how much we spent eating out; so far, so good. I've found a pizza sauce recipe the kids actually like (!!!), so homemade pizza is now in the rotation. And I'm resurrecting old, pre-kid favorites like chicken parmesan and kung pao chicken... they try them with suspicion. Someday, they may even like them.

* We're into triple digits again, and we'll be here until mid-October. I'm so glad I'll get to escape for a while. It gets oppressive when it's 92 degrees at 9AM.


One of the surgeries I had last October is called a bilateral paratracheal dissection.

In this operation, the surgeon removes two muscles at the front of the neck. The muscles were not infiltrated with cancer; they were just in the way. There were cancerous nodes in my central compartment, and getting to the nodes while preserving those muscles is not possible.

The main effect of removing these muscles is that my neck kind of caves in just above my collar bone, because the muscles aren't there to hold it out anymore. The typical slight depression that most people have is a little more pronounced on me, but not so much more that anyone would typically notice it. So, basically, it's a cosmetic thing.

But every so often, I have this feeling that my throat has collapsed on itself, like a tube that's been flattened out. Can't breathe, can't swallow. It's the weirdest feeling, and when it happens I have to shut down my brain immediately, because my instinct is to panic, and that's not helpful. I just have to remember to breathe, and take a drink of water, and that's usually enough to wash away the weirdness in my neck.

Last night, my hips were bothering me (no news there) so I was lying on my back in bed and fell asleep that way. I woke up literally unable to breathe. It was scary. I immediately flipped over so that gravity could help, and tried to suck in some air. Nope. Managed to cough a little, grabbed some air that way, then managed to cough some more and get enough of a breath so I could take a drink of water.

My theory is that my post-nasal drip essentially glued my throat shut. If I hadn't had the surgery, that wouldn't have happened. I also have either scar tissue or nodes or something pushing against my trachea from the other side, so with gravity pulling down the top of the tube, and whatever-that-is pushing up the bottom, there wasn't much wiggle room there, so to speak.

Seeing the ENT on Monday; we'll see what he says about the Sinus Infection from Hell, the choking thing, and oh, yeah, that biopsy. In the meantime: absolutely no falling asleep on my back.

Tuesday, May 16, 2006

what's going on here?

Not much writing, obviously -- at least not here, I did crank out two columns over the weekend, and have two more simmering on the backburner, so to speak. I'd like to get them out asap so I'm off the hook until well into the fall. There's just too much going on in the Real World, and it seems that every time I turn around, another column's due.

I hate that, it means Life is going by too fast.

I start my storytime gig tomorrow. I hope my voice is up to the task.

DS2's last day of preschool is Thursday. How did that happen? (See above, "Life is going by too fast.")

That's the high points for now. When I get a moment to post more, I will.

Wednesday, May 10, 2006

one more thing

I am astonished at how good Invasion has become.

Early in the year, they pulled all these stupid little stunts, jump scares and set ups with no payoffs. Now, it's one payoff after another, boom-boom-boom, and tonight's episode was as heart-wrenchingly terrifying as anything I've seen on network TV. Hybrids rounding up the humans and separating parents from children was horrifying to watch. The "maternity ward" was almost as bad.

Seriously, things are looking very, very bad for our little family of intrepid humans. Since they've done such a great job of filling out these characters, we really do care about them.

No word yet on renewal, but it should come soon. Ratings haven't been stellar since the hiatus, but with this powerful a storyline, and the return of new episodes of Lost giving it a good lead-in, Invasion will I hope be able to make a strong enough showing to get green-lighted for another year.

On 24, we have to suspend our disbelief at all the magic technology and the invincibility of Jack Bauer. On Lost, we have to put up with the ever-so-slow revelations about the island, the infinitely intertwined backstories, and the fact that every single character on the island is an idiot. Invasion is firmly grounded in the here-and-now, and every character has his good and bad sides. Yeah, sure, there are alien hybrid pod people running around, but even that issue has been consistently handled. I know I bitched about how stupid things were earlier in the season, but once this show got rocking, it just got better and better.

If ABC has any brains, they'll make eps of Invasion available for download, too, as they have done with Lost. There's a lot of potential here, and I hope Shaun Cassidy & co get a chance to work it out.


So, I was up past 2AM last night. (Stupid)

Today was 1) miserable 2) productive.

I am not allowed to complain about how lousy I feel on days when I've only managed 4 hours sleep the night before, for no good reason. So I don't, I just do the stuff that needs to get done, muddling through somehow.

My hands, though -- I can never remember having such trouble with my hands. I actually broke down and took some Aleve as I was trying to get dinner together, because my hands were useless. That's a new thing, very bad hands late in the day. They usually suck first thing in the morning, but then the stiffness wears off and I'm usually OK, maybe a 3 or 4 for the rest of the day. This evening I'd peg them as high as 6. Even now, with the Aleve merrily coursing through my veins, they're still creaky and popping, at least a 4. On the meds! 4! The hell?

Now, I'm going to pop another Aleve and go to bed, hoping my hands (and all the rest of me) will feel better after a decent night's sleep.

Tuesday, May 09, 2006

welcome to the family

I got a combined early Mother's Day, very early birthday present from DH.

I asked for it. I said: I don't want flowers. I don't want to go out to dinner. I don't want anything else, and I don't want anything else for my birthday, either. I want an iPod.

So he bought it for me, even though our cash flow situation is a little tight, since we just paid our honkin' tax bill and sent another more-than-the-mortgage-payment payment to M.D. Anderson. And we paid the endodontist for DH's surgery. And we have the boys' surgeries coming up.

I have some guilt, but not much. If we really couldn't afford it, he would have told me so.

I'm a little intimidated, though. It's going to take a lot of work getting all of this:
~400 CDs, 30x62 inches

uploaded, catalogued, arranged, and downloaded onto this:
>400 CDs,4.1 x 2.4 x 0.43 inches

Technology rocks.

small stupid things

1) I haven't heard the final report on my biopsy yet. I called over to Dr. O's office, and his assistant told me it had just come in today. The bottom line read was "negative for metastic cancer" or something like that, but I want to read the whole report! I'm still not convinced it was a great sample. I faxed over a records request to the hospital yesterday, and asked them to fax the report back to me. We'll see if they comply.

2) Appointment juggling with MDA. I had them switch my appointment with my surgeon so that it would be after my u/s and nuclear scan, and I thought that was all set. I got a call from the endo's scheduler today asking about that u/s (two were scheduled, so one had to be cancelled), and while looking at my schedule, I noticed that they re-scheduled my surgeon appointment for before any of my tests. I sent them a reschedule request with a note: This does not work. Please reschedule my appointment with Dr. C for after my u/s. Let's see what they do with this, now.

3) For never-to-be-known reasons, my paper medical records from my visit in February showed up today, attached to my request for the CD of u/s images. Whatever, dudes. I can't figure them out. Out of morbid curiosity I leafed through them, and stumbled across my blood tests, where the tumor marker leaped out at me: THYROGLOBULIN - 0.3
Hmmm. They told me it was undetectable. In what universe does "measurable" (0.3) equal "undetectable"? Not this one, that's for sure.

When I had my labs drawn before I went back to Houston, my Tg really was undetectable, but the local lab may have used a different method. Anyway, I'm not happy about being misled.

I poked around in the archives to see what my pre-surgery Tg was, and it was 1.4-1.7, so at least it's not that high. But it's still detectable, which is not, you know, the same as undetectable.

Can't do anything but wait, now. But here's an interesting thing. In this photo, you can see the lump on the right side of my neck, just along the jaw bone:

Not to worry, though. The biopsy says it's not cancer. (ha!)

4) Have started on the new RA meds. So far I haven't noticed any improvement, just the contrary. Everything hurts. I know it's bad because I've caught myself involuntarily whimpering a few times. It's as if the connection between the pain and my consciousness has been so clamped down that I actually have to vocalize to get myself to recognize: This hurts, move! Or something. I don't know.

These meds have a patient information sheet that is like the Encyclopedia Brittanica. It's scary, because it can kill you pretty quickly if you react badly to it. There is not just one, but two regimens for clearing the drug from your system should you find yourself in such a bad state. Fortunately for me the only new symptoms I've noticed are the return of the sinus pressure/congestion and a sore throat. The post nasal drip never really went away but it doesn't seem any worse now. I've noticed some dry eyes, too, but I have been very bad about sleep lately, so that I think is my own fault. (What the hell do I know?)

5) Weird neuralgia-like stabbing pains in my right foot today. Really, like someone jabbing me repeatedly with 2-inch long very sharp, very pointy needles. While I was driving, too -- very bad timing, as all I wanted to do was grab my foot and hop around, going "Ow! Ow! Ow!" until it stopped. Since I was on an on-ramp to the 202 when it happened, of course I couldn't do that. It lasted about 2 or 3 minutes and then subsided, but it was very unpleasant, and I can't remember that ever happening before.

6) The shoulder/arm pain/muscle weakness thing comes and goes. Overall it's a bit better since I am trying to watch posture, etc. I'm sure it's muscle (aka fibromyalgia) related. I'm also sure physical therapy would help, but we are broke and I have no one to watch DS2, who only has 4 more days of school.

We are hurtling towards summer here, and I just want school to be over so I can stop having to hover over the kids and their schoolwork. I'm concerned about the boys' surgeries, but I know they will be fine. I just want that to be over, I want to get on that plane and go, and lie on a beach and not think about what's waiting for me come August.

Thursday, May 04, 2006

May's column

The latest issue of LowCarbLuxury's online magazine is out, with my article on chocolate crepes.

This original recipe is from the delightful Nina Camic, with her permission. She had written last year about chocolate crepes with sauteed strawberries, and it took me a while, but I finally got around to trying some for myself.

Once again, I am disappointed that the LCL editors did away with my links in the article. I don't mind them linking to the products they're selling, that's fine. I do mind them taking out the link to Nina's original blog post, and the links to the two recipes (strawberry shortcake and ganache, also on LCL!) that I mentioned. It would have been nice for users to be able to click over to see those recipes easily.

Oh, well. The crepes are delightful. Thanks again, Nina!

surprise, with bonus Malkovich!

DS1 is reading Eragon, the first volume of Christopher Paolini's Inheritance Trilogy. Overall, I found it to be a slightly derivative, somewhat tedious work, with much improvement in the second volume, Eldest.

As he reads each day, we discuss what happened in the book. I am doing my best not to give anything away, and he is having a very good time. This book is at the perfect level to challenge and engage him without being so complicated as to lose him along the way. (That same simplicity is what made it a little tedious for me. That's OK, though.)

DD has to get into this act somehow, so she will often participate in the conversations, or try to -- it is next to impossible because she hasn't, of course, read any of it. But she does know some basic plot points, mainly that the boy Eragon found a dragon's egg, and it hatched into the blue dragon, Saphira. And she has seen the red dragon on the cover of Eldest, too. She has asked me a million questions, too: when is the next book coming out? what is it called? what color would it be?

I don't know, let's look it up on the web, I replied, and so we did. We discovered that book 3, perhaps called Empire but no one knows for sure, may be released in the summer of 2007, and it will feature a green dragon. DD had guessed green, and I agreed it made sense: sapphire, ruby, emerald. The set will look quite lovely on the book shelf!

But that's not all we discovered: there is a movie in production (probably post-production, come to think of it) right now; Eragon the movie will be released this December! The original notice we saw said it was to be released in June, and I was completely gobsmacked by that, since I stay on top of new releases even though I rarely go to the movies. I had just read the "summer movie preview" in the paper last week! How could I have missed Eragon? Well, it turns out I didn't, and release has been pushed back to Christmas.

I admit, I'm psyched for this movie. The cast looks fantastic, with Jeremy Irons as Brom, Eragon's mentor-guide, and John Malkovich as Galbatorix, the insane king. You can see many other photos here. This could be just the ticket for sustaining us through a long, Harry Potter-less winter.

Wednesday, May 03, 2006

low key

Didn't do much today, and now there's not enough time to say anything really worth saying. I think there was something I wanted to write about, but I've forgotten it now. Usually I hate it when that happens, but this time, I'll just go to bed!

Monday, May 01, 2006

hyperbole alert

Generally, I try not to watch television advertising. With TiVO, there's no practical reason to watch ads -- you can pause, putter around for a few minutes, then return and fast-forward through the ads to get back to the program. But last night I was folding laundry and I didn't feel like mucking with the remote, so I let the ads wash over me.

My newest candidate for "most offensive statement in advertising" goes to this beauty from the Dish Network (no link, the ad was too obnoxious for me to link to them):
There's nothing worse than paying too much for cable TV.
Really? Nothing?
Without even trying I can think of many things that are much worse. Right off the bat? (you guessed it) Cancer. (Was that a low blow?) How about that situation in Darfur? (Too far away?) What about all the single mothers trying to survive without child support? What about all the kids getting addicted to horrible drugs? I could go on, but I don't want to depress myself so soon before bedtime.

The ad wouldn't have been so bad if they hadn't kept on repeating that stupid line. I think it was only a 30-second spot, but by the time it was over, I wanted to throw something at the TV.


My schedule for Thyrogen shots and nuclear scan, ultrasound, etc etc at M. D. Anderson in Houston arrived today. We had rather a thick stack of mail, so I was literally surprised to find the envelope, which was stuffed with a several page "treatment guidelines" document as well.

I felt exactly as if someone had punched me in the gut: couldn't breathe for a moment, and felt tears starting in my eyes.

Get a grip! It's just an envelope, after all.

My appointments are all arranged for the week in late August I requested. I called the airline and the hotel and made my reservations, and somewhere in there, there was a subtle shift in attitude: I'll be checking out on Wednesday, I said, and: I'm returning on Wednesday. No hedging, no waffling.

Just making reservations that assume that the scan and ultrasound and blood tests will all be negative, and there will be no reason for me to stay past Wednesday. That attitude is quite at odds with the dead certainty I've been walking around with for a good month now, that of course it's back and of course I'll need more surgery.

I don't know why that happened, or how long it will last, but just for today, I'm enjoying being an optimist.