Monday, October 31, 2005

happy halloween...

The Grim Reaper, Pretty Witch, and Batman raked in all sorts of loot.

So begins the Holiday Season, which doesn't end around here until Easter -- between calendar holidays and birthdays, we won't go 3 weeks without having something to celebrate.

Recovery continues apace. Killer headaches attack me when my meds wear off, but other than that, things are OK. We'll see how I do at physical therapy in the morning.

Saturday, October 29, 2005

in the now, nearly normal

I planned my day like this: housework, lunch, nap, shower, church, dinner, whatever.

And that's exactly how it went. The morning was very busy but DD (!!!) was an amazing little helper, and between the two of us we did what I would usually do on a typical Friday cleaning day frenzy. She dusted and ran the stick vaccuum, and helped clean the bathrooms and change bed linens, and helped bake the cake, too.

The nap was good. The shower was better. Funny how a shower can be scary, not knowing what's going to hurt, and worrying about incisions and whatnot. Exhausting on multiple levels, too. I hate that. Just being nervous is exhausting. Having (new) chronic pain is exhausting, too. The old ones, I'm used to those and they don't wear me out so much.

My neck feels like it's being squeezed sometimes, other times it feels as if it's paralyzed. Most of the time swallowing is easy, but every so often something mis-fires and it just doesn't work properly. My head/neck mobility is better without the drain, but there are all sorts of new ouches to contend with. Somehow I hadn't thought about that. Oh, and more of my ear has normal sensation, but my right neck and the side of my head behind my ear are still totally numb, unless they're all tingly and oww-ie.

Sorry to whine. I don't really feel whiny. I actually feel pretty OK, I have just a bit of a headache from muscle tension. I'm coming up on time for meds so that will dissipate soon...

I sang a little bit in church, not too much because my voice gets tired and sometimes plain just spazzes out. The woman sitting next to me made a point of telling me, You have a lovely voice, before she left our pew at the end of Mass. That was really nice.

Friday, October 28, 2005

a familiar place

I'm pretty sure I was here last October around this time, too. Post-operative, realizing that the surgery I have just been through was pretty serious, after all. I manage to get through these things by repeating a mantra of "It's not so bad, it's not so bad," because it helps me to not think about how bad it really is.

Of course, there are a lot of things that are worse.

Still, it has been a little over a year now that I have been dealing with this cancer thing, and in all honesty I still don't want to believe it. Parts of me just reject the notion outright. Cancer? How absurd! How could I possibly have cancer? I'm too busy, too fit, too healthy to have cancer! I have a life here, could I please get back to it now?

Not yet.

Maybe whatever lesson I am supposed to learn (if any) from this didn't make enough of an impression last year, and so I am enduring essentially the same thing all over again, only worse. ("Once more, with feeling!")

I don't believe in karma, however much I enjoy My Name is Earl, (warning: audio on the link) but even if I did, I would have to call the karmic overlords on the carpet and give them a good chewing out. What's going on here? Did they err on the side of "too many blessings" and so have to even things out with this repetitive surgery theme? I didn't think it was supposed to work that way, anyway.

So here I am again, offhandedly contemplating my mortality. It makes no sense whatsoever for me to be given three amazing children only for me to be taken away from them. I understand, though, that it's not up to me to make sense of things like that. But if it's going to happen, it won't be because I gave up.

I had a Cancer Talk with DH last night. I don't think I ever told him before that sometimes in the past when I have been sick, I have thought that it would be easier to be dead. (Key sign of depression, right there.) I don't feel that way now, and can't imagine ever feeling that way again. I suppose I might get tired sometimes, but that's not the same thing at all. Today was a very hard day, perhaps the hardest since my surgery. Today was a day when a lot of realizations started sinking in: I really do have cancer, and my cancer is doing unexpected and quite serious things. That surgery was major, no matter how I want to spin it as "only moderately invasive."

I think it is a self-protective tendency, not to admit these things to myself until after they have been addressed. Aggressive cancer? Extensive surgery? Too scary too contemplate, and so I minimize them until it's over. Now I can start the alignment of my understanding with reality, and it's never easy. But it is easier knowing that one of the hard parts is over, at least for now.

Other difficulties remain, of course. How will what comes out of this surgery affect my life going forward? I like that the doctors at MDA take a pragmatic approach. When I asked about being tested for the breast cancer gene, they asked me why, would it change any part of my life? I answered no, since I already get an annual mammogram and do the self-exams as well. So they said, what would be the point?

I don't know what's going to come out of the pathology report and how that will change my follow-up. For now I know what I have to do to continue my astonishing recovery -- keep up my physical therapy exercises, eat well, and get plenty of sleep. I love my naps, and today actually slept well. My post-drain-removal trauma subsided as the evening wore on, until I actually felt quite human by about 8PM. My in-laws are arriving in the morning, and I'll be leaning on them heavily in the next couple of weeks.

After my last 3 surgeries I really did too much too quickly, post-op. This time I honestly don't think I have it in me. Last year after my thyroidectomy I was driving by this time! Yikes. I'm nowhere near that, this year. I have to let myself believe that this is as serious as it is. I have to take this seriously, and let myself get better at a decent pace. I have help, and I will use it.

I want to say, I'll be OK -- I know I'll be OK in the short term. I wish I knew what the long term holds, though. For now it's enough to focus on getting back to a normal schedule.

all apologies

Please excuse my lack of posting lately. Bluntly, I feel like hell.

I had my drain removed this morning so I'm no longer a member of the Collective. That's good, but I had expected things to hurt less once the drain was removed, and that hasn't been the case at all. All the nerve weirdness along the right side of my jaw and around my ear has intensified. It's not the kind of thing painkillers help, either.

To make matters worse, I have a recurring dream (nightmare) in which I've gone back to MDA for my 4-month follow-up and they've found more cancer. I wake up from this dream both depressed and angry. Can't my psyche let me recover from the present surgery before torturing me with the prospect of more? At least I have slept better the past two nights.

I've spent some time on the phone getting those follow-up appointments in place, so maybe that's what fueled the dream. I'm still waiting to hear about the pathology report, and to perhaps get an update on my prognosis, which I now realize no one in Houston ever mentioned, post-op.

Tuesday, October 25, 2005

for the curious.

And for comparison purposes as the scar heels in the weeks and months ahead -- here is a photo of my incision and the bandage over my drain, at 5 days post-op. Don't click on the link if you're at all squeamish.

There's still a bit of swelling and odd puffiness in my throat, I'm sure it will take a while for that to subside. I know the front of my throat may look different when healing is complete because of the paratracheal dissection; the doctor removed some muscles from the front of my neck. He informs me that as a result I will no longer be able to sing vibrato, but I assured him that was no loss.

I haven't really tried to sing since the surgery -- just a few notes here and there, and it did feel weird but then again everything throat-related, including speaking and swallowing, feels weird now.

As DH was cleaning the drain site last night I said, I feel like something from a science fiction movie.

He didn't miss a beat: You mean like The Borg?

Yeah, well, at least I don't have a tube coming out of my skull.

taking it slow

This recovery thing is weird. See, right after surgery, there are a lot of things you don't feel, because nerves have been severed or shocked. But over time, the little nerves come to their senses (haha) or regenerate or whatever, and then you start to feel things more. Incisions, for example. Ouch, but really not any more of an ouch than Tylenol can handle. I'm avoiding the hydrocodone like the plague. Between the Tylenol and the Celebrex, I'm doing pretty well, but I can definitely feel when either med wears off.

Anyway, my head and neck mobility are a lot better, so that helps a lot.

Physical therapy (PT) tomorrow, but the drain stays in until Friday morning. I'd rather have it in for an extra day and have my ENT take it out, than try and find someone else to do it on Thursday.

Today was exhausting even though I didn't do much. I did get a nap for a couple of hours, which is what I should have done yesterday.

I'm waiting on the pathology report and wondering if it will change my prognosis. I can't imagine that it would change much, other than the likelihood of finding more cancer down the line. The surgeon feels he got it all, and I certainly hope he's right. The characteristics of my case are unusual in that my tumor markers were low, and I only had 3 areas of uptake in my neck following my RAI in June, but here October they found all sorts of stuff in my neck and chest. A couple of possibilities are that I have some cancer that's de-differentiated (no longer absorbing iodine) or that it is much more aggressive than papillary thyca is.

Whatever they find, they'll still follow-up with labs and ultrasounds and CT scans, so it's not really going to make that much difference, at least in the short term. I don't really want to think about possible future treatments right now. I need to focus on getting through this one, first.

Tomorrow I'll make up a list of questions for my patient advocate and I'll try and get the ball rolling for getting my records (including labs, operating report, and pathology report) and scheduling my follow-up visit in February. Once that's all set and the drain is out, I can stop thinking about what happened last week and look to the future. For a few months, anyway.

Sunday, October 23, 2005

a productive day

Today, I:

- slept a lot more than I slept in Houston
- got the network working on this PC again, thanks to two different online chat sessions with the LinkSys support folks and a quick call to my ISP support line
- got caught up on last week's Rome and got all psyched to watch this week's only to find out there was no new episode this week
- watched last week's "Lost" instead
- did my physical therapy exercises twice, as directed

Feel like I've been hit by a truck and nearly decapitated in the process. The weirdest is the sort of painful numbness of my right ear and jawline, a result of nerve trauma. Sometimes it itches but scratching it does no good. Having nerves misfire is a very uncomfortable feeling. I'm hoping when the swelling goes down in my neck it will subside. It's not keeping me from doing anything I want to do, it just feels weird.

And now, for the fourth time today, it's off to bed.

Saturday, October 22, 2005


Safe, mostly sound, very tired. YAY!

out, about, and going home soon

Somehow I still can't believe it actually happened, even though I now have this huge incision around my neck. I also have a drain, which is kind of icky, but DH is a total trooper and is taking good care of both me and it. (I suppose that's kind of the same thing.)

Surgery took about 4-and-a-half hours. Since I had to repeat the procedure names about 12 times pre-op, I now know them by heart. I had: a complete right neck dissection, a central compartment dissection, a superior mediastinal dissection, and a bilateral paratracheal dissection. Doesn't that sound creepy? Now that it's done I can handle rattling that off a lot better. Anyway, the dr said he found a lot more cancer than he expected even from the ultrasound and the CT scan, so it is a very good thing I had this surgery now. I don't really like to think about the alternatives so I will just move right along...

I woke up in recovery feeling pretty OK and able to talk right away. I couldn't move my right shoulder or upper arm, but my hand and forearm were OK. Later that evening I could move both my shoulder and upper arm. Now the only numbness I have is along my right jawline, and my right ear. It's weird. I do have swelling on the right side of my neck, and I'm sure that has a lot to do with the numbness. Plus the poor nerves have been shocked all to pieces, I'm sure.

The staff kept a watchful eye on my calcium levels and my parathyroids seem to have come through OK. Even so the endo has bumped up my calcium to 3 grams/day. I had thought that I was only doing 1g/day before surgery but then I looked at the bottle and realized I was taking 2g/day, so no wonder I was low post-op -- I missed my 2g dose on surgery day.

Now I will tell you something you probably won't believe, but the food at MDA is quite good. There is a "room service" menu and you can order anything you want (depending on what diet you're on per dr's orders, of course -- but I was on "normal diet as tolerated"), so I had some pretty decent meals. One of the drinks they offered was peach nectar, which is a favorite so I had that more than once. Hey, if you can't indulge post-op, when can you? I also had some really amazing homemade granola with plain yogurt, which I think may be one of my all-time favorite breakfasts.

The nurses were terrific. I probably had 10 different people working with me between recovery and my room, and they were all very kind and helpful. And especially good about keeping the good pain management drugs flowing. Speaking of which, I am doing well there with minimal pain and only taking Celebrex for now. I have some hydrocodone (heavy duty stuff) to take if it gets worse, but it does make me feel very loopy. I don't sleep right on that stuff either -- I took one last night and drifted in and out until it wore off, when I finally fell properly asleep.

The physical therapist came in to see me and gave me my shoulder-strengthening exercises, and was amazed at my range of motion. I knew there was a reason for taking up yoga and swimming this fall. I have been a good girl and already done one rep of my exercises this morning.

So we had a late breakfast and now DH is seeing about our transportation to the airport tonight (our flight leaves after 8PM) and also about getting a duffel bag or something, because we have a lot of stuff we didn't anticipate getting -- both paperwork and supplies for caring for my drain. We need another bag! But all will be OK.

I am tired and my right arm feels like I played tennis all day with it. My incision around my neck is probably 9 inches long but doesn't hurt (yet) as the nerves are still shot, I'm sure. The surgeon placed the steri-strips perpendicular to the incision so the effect is one of a fringed collar. It would be funny if it weren't so freaky looking. I hope it doesn't scare the kids!

DH says he doesn't notice the swelling in my face but I do. All in all I don't look too bad considering what I went through, and I certainly feel better than I expected to. I am still nervous about the flight home but really looking forward to getting there. I know with DH I will be all right even if I have a little more pain or discomfort, it will only be for a short time.

Thank you everyone for all your thoughts and prayers. It has really been a tremendous help. This will probably be the longest update for a while since I know my mom will not let me sit at the computer for this long at home (hee!). That's OK, I'll pop in with little updates when I can. I'm doing well and going to be fine, both dr and physical therapist say back to normal activities after 4 weeks. That'll go by very quickly.

Wednesday, October 19, 2005

the Great Unreal

I'm having an after-dinner coffee (vaguely wretched, but I've had worse, from a styrofoam cup) and sitting here in "the internet room," not really believing any of this. Any second now, I'll wake up, right?

Probably not. DH is en route now, and should be here in a few hours. It will be nice to see him. Everything appears to be set -- hotel room, flights home, physical therapy for when I get there. Everything will work out.

Just none of it feels real right now, none of this has felt real for this entire trip. I will be very happy to go home.

it's a go

Surgery tomorrow, check-in at 11AM. The dr will do a right neck dissection, plus 3 other things that involve polysyllabic words preceding the word "dissection."

However, Dr C doesn't do the huge incision, he'll just make my current scar longer.

Expect to be in hospital over night, discharged to the hotel the next day, and OK to fly home as long as I am not puking -- so hoping to get home Sunday.

Feeling a little insane but also relieved now. My BP finally registered its normal (low) usual when they took it in pre-op: 88/54. Funny how I seemed to relax when I finally know what's going to happen, even though it's surgery.

DH is making arrangements to fly in tonight. I think he's worried and feeling a little harried right now, I hope he's OK. Haven't managed to get a hold of my mom or the kids today, but there is still plenty of time for that.

Now R & I will figure out what to do with my remaining hours of freedom (hee). Yesterday we spent a long afternoon at the zoo and had a good time. The weather here is really lovely.

Tuesday, October 18, 2005

"they'll clean it out for you"

I had my ultrasound this morning and another fine needle aspiration (FNA) biopsy. Ultrasounds are fine, they don't hurt, but having an already lumpy-feeling throat get pressed on is always a little discomfiting. The u/s identified some things, I didn't ask how many or how big -- but one was big enough that they wanted to biopsy it.

So then the radiologist came in and gave me a local (ouch - a poke then a burn then stinging). Then she went for the node/mass and in spite of the local it still hurt exactly as much as every other un-anesthestized FNA I have had. She was extremely and sincerely apologetic, and since I didn't have any expectation of numbness, I wasn't upset anyway.

The best thing was she then took the slides and read them right away. It took about 20 minutes (I had a little nap, it was nice and quiet) and then she came in and told me she was seeing papillary cells. That's when she said, They'll go in and clean it out for you.

I said something like, so I need surgery, then? and she replied, You want surgery.

I know what she means, but I really don't want surgery. I'll do what I have to do, though.

Tomorrow morning I have an appointment with Dr. C and we will go over all my test results and I will hear his recommendations. I know I'll be going under the knife again, I just don't know when.

Now, we're going to the zoo!

Monday, October 17, 2005

cancer center, day 1 - EoP

End of Procedures, that is.

Got to bed staggeringly late, as I was too wound up too relax or sleep. Got up at 6AM, was over in the Head & Neck Dept by 6:30, where R & I waited, and waited, and waited. It seemed to take forever to call me, forever being approximately 45 minutes. 45 minutes is a lot of time, you know -- in which I could have been sleeping or doing something like getting some breakfast. But, that was not to be.

After paperwork, another more moderate period of waiting (that first time was the longest wait all day, all the others were maybe 10 minutes each), then to see a triage nurse who took vitals. I'm 170 cm tall, I'll have to convert that to inches later and figure out if I am as tall as I say I am! Then the triage nurse went over my record. Then I briefly met Dr. C's nurse. Then Dr C's intern examined me. Then the good dr himself came in and did the exam. Having to do the "stick your tongue out and say EEEE" test twice in the space of 15 minutes is icky. (It wouldn't be so bad if not for the little mirror they have shoved into the back of the throat.)

Dr. C says he will be astonished if the tests do not show abnormality. The question is, what will be the size and nature of anything they find. Those two factors will determine the basis for his recommendations. I am not a candidate for radiation treatment now. I am being evaluated for surgery. It is very unlikely they will identify anything that requires immediate surgery, but I told the doc I'd like to get it over with asap if it's necessary.

After Dr. C, over to the endocrine neoplasia specialist, Dr. W. Only before I met him, I was raked over the coals by his nurse, S. She had a strangely confrontational manner, and I found myself quite literally defending my presence at MDA ("This last biopsy says it wasn't cancer. What are you doing here?") and my health history ("What is this 'precancerous' thing you've written for your mother and grandmother?") Anyway, she did a very thorough exam herself, and gave me a breast exam tutorial. Then Dr. W came in and we discussed my Cytomel issues, and he told me it was OK to drop it back down to 5mcg/day. Hallelujah! I did push back at him a bit on the quality of the combined t4/t3 therapy studies as it is one of my pet issues. But I personally have no dog in that hunt now, I have no idea how I'd feel on just T4 and am willing to give it a try. I'm very happy to be knocking my T3 dosage down a bit and hope it will help my digestive system slow down.

After Dr. W (it's now about 11:30), I went over to get labs drawn: 6 tubes. Yikes. And I had a chest x-ray, too, my first ever.

Finally: LUNCH! We grabbed some sandwiches from the deli and ate outside in the warm sun. It's freezing in here!

After lunch, my head/neck CT, with contrast, and is it ever a strange feeling to get that rush of iodine heat. It's nice to be warm, though.

U/S tomorrow morning, with an FNA if necessary. And Dr. C says we'll have results from anything we do tomorrow pretty much immediately, which is cool. We'll discuss the CT scan results on Wednesday morning.

So: could be surgery, could be "wait and see." I will know more tomorrow, and should have a definitive plan on Wednesday.

Sunday, October 16, 2005

greetings from Houston

Well, I'm here! The first parts of the trip went remarkably smoothly, which was totally balanced out by the 2-hour $20 tour of Houston I got on the shuttle ride over to the hotel.

Really -- got to the terminal in Phoenix, and within 5 minutes I had checked my bag, hit the ATM machine (since I forgot to get cash earlier), passed through security, and bought lunch. I then spent about an hour and a half hanging around the airport totally bored.

The flight was brief (just over 2 hours) and uneventful. I did some work -- wrote a column! edited my thyca-for-kids book! worked on some sketches! I even attempted the crossword puzzle in the onboard magazine. Before I knew it, we were landing (literally -- I was completely surprised by the bump.)

It took a while for my bag to come down off the plane. Clearly, it's a first-in-last-out system, which is just so wrong. But I understand why it happens. Then I easily found my way to the counter where the shuttles are staffed, and got my ticket. It was about a 10 minute wait, and then we were off.

That's when the trouble started. Tonight was game 4 of the Houston-St. Louis series. When I got on the shuttle, it was the bottom of the 9th with no outs, but Houston held on by getting an out at the plate followed by a double play. By that time we were just leaving the airport. Of course our shuttle route takes us right by Minute Maid Park, and of course our shuttle driver is on auto-pilot and takes us there, even though we were just listening to the game, and we all knew it had just ended -- the traffic was murderous. Really. We managed to survive it somehow, and all the passengers were either friendly or quiet, which amounts to the same thing in that kind of a situation.

A big smooch to the one Houstonian who piped up and asked why the driver was going all the way over to the Galleria when MDA was right down the street? The driver had forgotten about me -- that one comment probably saved me another 45 minutes. Some people are really, really awesome like that -- the other passengers didn't mind being put 10 minutes out of their way to save me a much longer drive. And they all wished me well when I finally climbed out of the van. So yes, it was an unnecessarily long drive, but it could have been a lot, lot worse.

Now I'm here and finished scoping out my room and the first floor guest amenities (I'll do the second floor & the restaurants when I'm done here.) The hotel is very nice -- this is their computer I'm using, it's part of the deal. The room is lovely. The pool is small but I may go splash soon anyway, after I get something to eat.

So I hit a little bump in the travel stuff, but nothing major or really even too unpleasant. Here's hoping the rest of the trip goes well.

don't bring me down, Bruuuuuce.

Another song from my formative years that I could never understand. Who is Bruce, anyway? I supposed if I google'd ELO and don't bring me down together, I'd find some fangeek page that would explain the lyrics, but I don't care enough to do that.

I heard this particular blast from the past on my after-dinner dash over to Fry's to buy some ice cream for dessert. (Note: very good, but also very sweet. I did not read the ingredient list before I bought it. Bad Mommy! Well, a little high fructose corn syrup every now and then isn't going to bring on Type II diabetes. I hope.)

I feel horrible (mentally), and tired ( physically). (Yes, I am using ice cream as a comfort mechanism -- do you have a problem with that?) Also, more or less unprepared even though the laundry is done, and all my paperwork is assembled. I've even printed out my boarding pass!

I have to leave here around 11 and I haven't packed a stitch of clothes -- I haven't figured out what to bring, yet. Yeesh. And since I'm up so late tonight, I won't have much time to figure it out in the morning. Oh well. At least everything's clean.

I don't want to go. Somehow that flat declarative statement fails utterly to convey how deeply I do not want to go. I keep asking DH, How would it be if I stayed home and didn't have cancer, instead? He does not appreciate my sense of humor, I think -- I can't honestly assess since I am so agitated that everything annoys me. It's like every nerve is extra-sensitive now. I have that "need to cry" feeling and it has been there most of the day. But I don't cry because nothing changes when I cry, except afterwards I feel really sick. So my not-crying has nothing to do with being brave and stoic and "doing what must be done" and all that crap. If I could cry without feeling worse afterwards, I probably would.

Except in front of the kids, that's way too much for them to handle. Only happy tears from Mom are allowed in front of the kids, unless someone died or something. Since I'm trying to minimize how much they freak out, I'm holding all my emotions in check around them.

Today was way too busy and not at all the kind of "last day home" that I would have scripted for myself. I could be pissy and blame DH but it is not his fault. If I had wanted things to be different all I needed to do was 1) speak up and 2) have my act much more together than it has been. Not that my act has been incompetent lately, not by a long shot -- but I keep letting things fall through the cracks and then when I rediscover them I have to attend to them right away, and that pushes something else off schedule.

It rather helps to have a very hard deadline, like the departure time of my flight out. I really don't care if I don't get much sleep tonight. Once I get to the airport tomorrow the only person I'll have to look after is myself, so I can nod off in the terminal and fall asleep on the plane, too. And take a nap at the hotel before R comes in (much later than me.)

I'm scared for myself and worried about my family, and trying not to be either one. It's kind of a recursive worry -- I worry about my family worrying over me. It's kind of silly, and completely unproductive. Part of the worry is non-recursive, straight-forward worry about how the kids will deal if I am gone more than 2 days. There's nothing more I can do to make sure they're OK, though. I just wish I knew what's going to happen over there in TX.

Uncertainty, it's a bitch.

Saturday, October 15, 2005


I have all sorts of stuff to talk about, but now is really not the time to do it.

I managed to get just about everything done today, leaving tomorrow a lot less hassled, I hope. The day was fraught with stressful situations, including being very late picking up the kids from school because of 1) bad planning on my part and 2) bad traffic in Phoenix.

However, I have all my records, and we made it to the airport at exactly the right time, just a few minutes before my Mom came out of the secure area. We had pizza for dinner (I could eat pizza every day, lately -- I don't know why I'm craving it so!) which was just fine with me.

The house is clean, and DH and I did the grocery shopping after dinner. Now all I need to do is laundry, packing, and paperwork -- oh, how I detest filling out medical questionaires!

All in all I spent about 4 consecutive hours on the road, with breaks no more than 15 minutes (and usually much less) at each of 5 stops. Over 100 miles on the van, and totally loving the new tires. We have some awesome freeways out here.

Everything hurts -- crawling off to bed now...

Thursday, October 13, 2005

packed schedule

Things will be very busy over the next few days.

Tomorrow, I have to run up to Phoenix and pick up records at two hospitals and my endo's office. The fact I requested my records about 3 weeks ago is irrelevant. Not one of these places makes it easy to get a copy of your own information. It's very annoying. At least I called today to make sure I can actually pick it up tomorrow. I'm not sure how useful it will be in Houston, but I want to bring all that information with me. Of all the requests I sent out, only Banner Good Samaritan came through in a timely manner. Unfortunately I didn't realize I needed to request my scans separately from the film library; this fact is not documented anywhere. In fact, there's a checkbox for "films" on the form I filled out; I didn't check it because I figured that films would be included in the "all" box I did check. Wrong!

Tomorrow's also housecleaning day, but that only takes about an hour or so, no big deal. I do have to straighten up the guest room for Mom, though, so that will add another half-hour...

Speaking of Mom, I'm on tap to pick her up at the airport just before 5PM. So I think I will take the kids for a quick snack after school before we all head up to the airport. DS2 and I will be spending an awful lot of time in the car tomorrow!

Saturday, I'm hoping for a date, actually -- Mom is super about that sort of thing, and it would be really nice to go out with DH before heading off to Houston.

Sunday, travel day -- whee!

Monday: register at 6:30AM, then see the surgeon, then see the endo, then have labs done, and that will be the entire morning, I'm sure. I also have a CAT scan scheduled for the afternoon.

Tuesday: ultrasound scheduled for mid-morning... and who knows what, after that?

Wednesday, October 12, 2005

yet another bad news/good news scenario

This morning DH had to leave early, so I was on kid duty. Got 'em up, fed, and all packed up for school, and we trekked out to the garage for the quick drive over.

I fastened DS2's seatbelt and as I was closing the door, I noticed that the left rear tire had lost at least 60% of its air. Yikes! I took a long look at it and decided that I could drive it a short distance without trashing the rim, so I took the kids to school, and then drove it over to the tire store.

I've been driving this van for close to six years now, and we've had our share of problems with the tires. I think the biggest mistake I made was letting the guy (at the same store) talk me into putting a narrower tire on the same rims -- the rims are for 225s, and he sold me a line that 215s would be just as good.

Now, about 25K later, just over half of the tires' expected 40K road life, they were showing such uneven wear that they were just not safe. When the tire jockey explained this to me, and showed me the wear on the treads, I immediately realized something and said, "Oh, so that explains all that vibration at highway speeds."

The car used to vibrate something fierce right around 70 mph. Since everyone here drives at least 70 mph unless there's a huge traffic jam, I used to feel that vibration every time I hit a freeway. We've had the tires rotated, balanced, pressure-checked, you name it. We've had the alignment checked. Everything checked out fine. D'ya think, maybe, that it was all caused by having the freakin' wrong size tire?

Well, I will say it did take a while for the problem to develop, but still.

So I shelled out close to $500 today for 4 new tires (225s, of course), and an alignment. Tire jockey extracted promises from me that I would rotate the tires frequently. Yes, sir!

Honestly, I'd say I don't know why I went back to that store since they sold me those bad tires in the first place, but I do know why I go back. Because they'll fix a flat for free, and they're always very respectful and accomodating. I'm sure the guy who sold me the smaller tires was just trying to save me some $$$, because I recall that the 225s were a lot more expensive than the 215s a few years ago.

So, bad news: had to spend a minor fortune on new tires.

Good news? Nary a wobble on the trip up to the doctor's today. How pleasant it was to feel rock-steady while cruising up the 101. Hooray for safe cars!

Other good news: when DH called this morning just to check in, I told him about the tire/alignment situation and gave him a ballpark estimate of $475. Can you guess the first thing he said? It surprised even me, but also re-affirmed my belief that I have the best husband ever: Oh, good. Then we talked about the uneven wear pattern, the highway wobble, and the need for more frequent future rotations. Not a word about the price -- but how could anyone quibble? DH insists that we be safe! I'm driving his entire family around, after all.

what do I know?

Since I have a serious -- treatable, but still serious -- medical condition, I tend to relate everything that happens to my health to either the condition itself, or the medications I take to keep everything under control.

Lately I've had a sore throat and trouble swallowing, and since I know that there is a mass on my thyroid bed (or there was on June 2), I just figured that was it, you know -- the Persistance of Cancer. It's hard to completely eradicate, and if you leave even a little bit in there without whacking it with radiation or chemo, it will come back and haunt you.

Today I saw my ENT, Dr. O, and let me just take a moment to gush: He listens. Really! And he doesn't talk to me like I am an idiot, which is way cool.

Dr. O looked at the red spot on my tongue, which is still around even after that course of Nystatin. (Ick) He declared that it doesn't look fungal to him and in fact it looks exactly like something that is in the process of healing on its own, and he advised just letting it go. He did take a sample so it can be cultured, which is nice, and of course he'll call me if anything shows up that I need to do anything about, but he said it really was missing several of the key characteristics of a yeast/fungal infection and he would be very surprised if that's what came up.

So that was cool, and then he asked me about the thyca situation, and I filled him in on going to MDA. Then I complained about my sore throat and he took a look -- this is always bizarre, you know: mouth wide open to accomodate the dentist-style mirror that is stuck waaaayyyyy in the back of my mouth, and then having to sing/say "A" in a sustained note, or take a deep breath, or say "E". But it is also very cool because so many of the structures are visible if you do these simple things, so good docs like Dr. O can actually see what's happening.

He didn't see any signs of infection but he did see signs of chemical irritation on my lower esophagus. It's the dreaded acid reflux!

I should have known. Really, I should have. I have been through this a few times before, usually around stressful times -- stress? who has stress? -- and yet I never seem to connect the heartburn or gurgling stomach or just bad digestion with needing to take a proton pump inhibitor.

Dr O has me on a 3-month course of Prilosec (we're giving it a try first, since it's OTC and inexpensive) to settle things down and let my poor throat heal.

The bad news is I may be someone that has to take this more or less forever. My mom has a hiatal hernia and is on a ppi of some kind, has been for years -- and it provides her a lot of relief. I've long believed that adhering to a controlled carb diet (not necessarily low carb, but way lower than that Standard American Diet allows -- say 75 to 100 g carbs per day) would keep my acid problems in check and for the most part, that has been very successful. However, sometimes I just stress out and all of a sudden, I'm pumping out more acid than I can properly metabolize. Eww.

The good news, however bizarre that may sound, is that being diagnosed with GERD was a profound relief. Maybe now I won't need surgery! I thought my throat was sore because of the cancer, but it's not -- or at least, not entirely. Thinking about it a little more clearly now, that makes sense. My suppressed Tg was only 1.7 last time, after all, that's pretty low, certainly not reflective of an out-of-control, growing cancer. Yes, there are indications that something's still there, but the somethings are still very small. And who knows, by the time I get to Houston they may be smaller still, as the RAI has an effective period of up to 6 months. It's entirely possible, although I have no idea how probable it would be. But it's nice to have another possible pathway for my thoughts to wander down.

Dr. O agreed that a positive ultrasound was not definitive enough evidence on which to recommend surgery, and was pleased to hear that they would be testing me at MDA. Dr. O also knows the guy I'm seeing, and has a high opinion of him. Everyone is so encouraging, but Dr. O in particular focussed on one specific thing: positive outcome. He told me about a patient he had consulted on who had even more significant local metastases than I had, and whether or not he was a candidate for surgery to remove some junk that had adhered to his recurrent laryngeal nerve. We are very grateful that we have the option of the RAI treatment for the well-differentiated cancers. This patient, he told me, has had an excellent outcome, and he also told me that my age is working in my favor to insure that I have one, too.

This happens from time to time, I get the "I have a bad feeling about this," vibe -- but I'm wrong. Oh, how I love it when I'm wrong! Well, maybe I'm not entirely wrong -- I mean, I do have something that needs treatment, and I'm on a new round of drugs, but hey -- it could have been a lot worse. This, I can deal with. I don't feel in the least bit embarrassed or annoyed over "why didn't I think of that?" I'm not a doctor, after all -- that's why I pay these guys the big bucks. Believe me, with a $40 co-pay, it really does amount to big bucks pretty quickly. Visits like today's are totally worth it.

by the way

To everyone out there that's praying for me, pulling for me, sending good karma my way or just rolling your eyes at me because you know I'm crazy but I'll really be OK: Thank You.

A couple of people in my yoga class know about my upcoming trek, and all my kids' teachers, too. The administrator in the Church office knows, as do the folks in the office at my kids' elementary. Without exception, everyone wishes me well. Nearly everyone says, "I'm praying for you," and not a few say, "I pray for you every day."

It's really overwhelming. It's impossible to say how much I appreciate it. I know there are people who are skeptical about the power of prayer, but I am not one of them. Because even though I have been through an ubelievable amount of medical crap over the past four years, in all honesty I can say it could have been a LOT worse.

I've had 3 major surgeries but snappy recoveries from each. I've had a jillion skin biopsies, but not one came back requiring anything more serious than a little more cutting, and what's a slightly bigger scar in the grand scheme of things? It's nothing. I have rheumatoid arthritis and fibromyalgia but I can still haul all 3 of my kids to DisneyLand and around DisneyLand and have a great time and not be bed-ridden for a week in recovery.

I have cancer but I still have all my hair, and my hair is awesome. I don't have a thyroid but I also don't have a weight problem, which is something of a minor miracle. Yeah, the cancer is still hanging around and being a pain in the neck (ha! I joke, but no.) But I am the most blessed woman in the world, because even though I have these "issues," I can still take care of my family, my husband and I love each other more than ever, and there's a whole future out there in which I know cancer will play a much reduced role.

I say my own prayers, of course, and thankfulness for what I have is always right near the top of the list. I also petition and rail and bargain. I have a rich and varied (some might say deranged) prayer life. What I ask for, for myself, is just this: to see the path that God has set for me, for the wisdom to recognize it for what it is, and for the strength to follow it. That about covers it for me -- for everyone else, I'm much more demanding. Since I have a whole amazing group of people who pray for me, I kinda think I'm covered.

So, thanks, everyone in the pulling-for-Joan pool. You're awesome.

I'm not going to bring the laptop but the hotel has free 'net access on their own PCs. I may have to camp out in the lobby at odd hours to get access to a machine, but I can deal with that. It's not like I'm going to have much else to do. If I knew there would be wireless access, I'd go ahead and bring the laptop -- but I don't know about it that, and I don't want to deal with dialup for a few-day trip if I have other options. It'll be OK! Really.

Grand Rounds v2r3

aka medblog fix...

The latest Grand Rounds has been posted at doulicia, a labor doula's blog.

My recent epic post, the problems with labs was included, but doulicia's intro sets the tone:This week’s Grand Rounds is meditation on symbiotic relationship between law and medicine. I mean, without medicine, what would lawyers do? Since she's a non-practicing lawyer as well as being a working health-care provider, she knows what of she speaks. Go, read -- as always, it's well worth it.

Monday, October 10, 2005

pushing through it

I took the kids to the zoo today. We did nothing all weekend -- it's not at all clear why that was, either, except for me going to bed very late and so not feeling like doing anything. So today, to kind of sort of make up for being such a slug all weekend, we all went to the zoo after picking DS2 up from school. It was a very odd day in that the little guy had school when the older two did not, but hey, it was easy -- dropped off the peewee, came home, and made the older two do their homework and reading -- ha! They grumped about it, but I was so very glad that they just knuckled down and did what they needed to do, so we were free to play the rest of the day.

The Phoenix Zoo completely rocks, but they still got tired. It ended up being a minor replay of our DisneyLand technique: DS1 pushing DD in the stroller, while I piggy-backed DS2. DS1 likes having the stroller to lean on and so doesn't mind, but DD is a terrible whiner when faced with the idea of having to walk for even 5 minutes. We're going to have to train before we visit any more theme parks, because she's getting way too big to ride in the stroller. It hasn't given out yet, though, for which I am grateful.

Anyway: I feel a bit squeezed, like I need to get certain experiences in before I head off to Houston, where who-knows-what will happen. That would explain my near-obsessive house-cleaning and de-cluttering, too. Areas that have been piling up and up for weeks are suddenly unbearable to me, and I've dispatched them one by one until now things are actually looking really good. Mom will be here on Friday, but that really doesn't have anything to do with it: she has way more going on in the "stuff" department than I do, and I have the excuse of having 3 kids. More to the point, she would never ever ever say anything to me about clutter, either. It's just not her style, and one of the many reasons why I love her so dearly.

Tomorrow: a more or less "normal" Tuesday, we'll see how I survive the swim/yoga duo. I was fine at the zoo, even carrying DS2 around. It's weird because even though I do hurt all over, I can still do whatever I want, basically. Usually I'm just ultra-creaky when I start moving, but once I'm going, I'm good.

This time next week, I'll be in Houston, and I still haven't decided whether or not I'll lug the laptop with me. It's such a behemoth compared to what they've got now, and the harddisk had some serious issues last week. I think I can survive N days without a computer, can't I? Yeah, I can -- and it will probably be good for me, too. By next Monday night maybe I'll have an idea of what's going to happen. That would be very cool indeed.

Sunday, October 09, 2005

Freddie Mercury delivers

I had to run out after supper this evening and pick up a few groceries, and on the way home I put on the "classic rock" radio station. I think I know their entire playlist by heart, which can be a fun thing if I'm in the right mood. So tonight I caught most of Aqualung (I'm still very fond of Jethro Tull), and that was followed by the definitive Queen rock anthem, "We Will Rock You."

That song immediately takes me back to either a) high school or b) hockey games, since it has become inextricably linked in my mind to both the time period and that testosterone-fueled sport. Sometimes that's unbearable, but tonight I was just in the mood to bang my head along with that pounding rhythm -- stomp stomp clap -- stomp stomp clap.

But then I listened, for the first time in forever, toFreddie Mercury wailing those lyrics, and thought, I hope they play "We Are the Champions," too. Sometimes the radio stations just play "We Will Rock You," and deny you that nearly post-coital satisfaction of the slow building, triumphant ballad after all that thump-thump-thumping.

Well, the radio station did play "We Are the Champions," and I had a chance to really appreciate how well Freddie Mercury could sing, and just how perfect those two songs are. Please note that I'm not saying they're the best pop songs ever written, or even that they are my favorites. I don't even own a Queen album, and doubt I ever will. But this pair of songs, they work perfectly. They've been so over-played and commercialized that it's easy to forget how appealing they are -- and of course they are over-played and commercialized precisely because of their enormous appeal.

But that appeal is all Freddie Mercury, who (AFAIK) wrote the songs as well as being the lead singer. So much talent, and what pipes! I could listen to that man sing the phonebook and be happy, I think. OTOH, the whole Queen scene is definitely a mood thing, because bombastic over-production can definitely get on my nerves -- which explains why I don't own any of their albums.

But still, Freddie Mercury made tonight's errand run a lot more fun than I had any expectation of it being. I found myself grinning like an idiot, a little embarrassed that I like these songs so much, but almost immediately rejecting the impulse to be a grown-up and roll my eyes over a pair of such silly songs. The fact is, they've been a part of my life for decades now, and the associations remain positive. Maybe it's because I hadn't heard these songs, as songs -- not on a commercial soundtrack, or as a pep-rally-style cheer at a game -- for so long, that I enjoyed them so much tonight.

I was surprised by the impulse towards happiness that snuck up on me. I didn't expect to have fun, and I have so much weighing on me that this unexpected levity was frankly amazing. Nevermind being surprised, I remind myself, take your fun whenever you can find it!

a rare accomplishment

I made a point in an online discussion today and actually managed to persuade the Other Side to agree with me.

Feels good.

Saturday, October 08, 2005

where's my air?

The past few days I've noticed a slight out-of-breath feeling when I sit at the computer for a while, or when I'm lounging in front of the TV. It's weird.

I have no trouble at all during the day (that I've noticed so far), when I'm active. I swim and get out of breath, of course, but that's because I'm really exerting myself, and I am able to catch my breath just fine if I pause for a few minutes.

In yoga class, I don't have any problems with the controlled breathing we do as we move from pose to pose. Have I mentioned how fantastic the yoga instructor is? She continues to amaze me, tailoring the class to the varying abilities of the students, and always challenging us with new poses. I come out feeling relaxed and taller (heh). There's a good sense of earned fatigue, too: I'm tired but it's OK to be tired because I just worked hard.

Today I did not much until about 1-ish, when I finally got off my butt and did all my housework, then took a quick shower. Did the school pickup and then took the kiddos to B&N, it's closer and Border's cafe won't be open until tomorrow (well, later today, now.) Read to DD and DS2 for at least half an hour, letting them choose books in turn: Corduroy, Spongebob, Curious George, Teenage Mutant Ninja Turtles... can you guess which child chose which books? DS1 read Captain Underpants and I have to admit, those books are pretty funny if you're 9 years old. I guess it's a good thing that I can still appreciate humor targeted at 3rd graders.

So I did some stuff today, but it wasn't all that much, and why can't I just feel decent, huh? I want my air back. I don't know whether to feel better or worse about the most likely cause of this feeling: panic attacks. I don't feel like I'm freaking out, but I'm not sure that's relevant. I certainly have no other symptoms of the typical causes of shortness of breath, including heart failure, chronic pulmonary obstructive disease, arhythmias, or any of that crap. I have low blood pressure, an excellent lipid profile last time I checked, and I'm scrawny. Plus I've been working out regularly for 5 weeks now, and have definitely developed increased aerobic capacity and stamina over that time.

Ha! A thought just popped into my head, and what do you know? Hyperthyroidism can produce breathlessness. Since I'm in a permanent state of TSH-suppression (that is, I'm literally always hyper), this is most likely just the latest lovely side effect of my thyca treatment.

This trip to Houston can not come soon enough.

Thursday, October 06, 2005

the problems with labs

I have nothing against labrador retrievers, or dogs in general, they're not the "labs" I find problematical. I'm referring to the labs, or laboratory reports, that list a bunch of incomprehensible words and acronyms, along with a bunch of equally incomprehensible numbers, that delineate exactly what was found in a blood sample.

You'd think that someone with as many serious and complex medical issues as me would appreciate the simplicity and completeness of the blood test for diagnosis. I am profoundly grateful that we can monitor my cancer through such a simple thing, but I'm still not too keen on the labs themselves. There's a whole medical culture built up around labs that just seems slightly off, to me. Herewith are the problems I have, and some thoughts on improving the situation.

Labs are often ordered at the wrong time. If you have to make an appointment to see your doctor for a specific disorder that will be diagnosed and/or treated via a bloodtest, it makes infinite sense to have the results of the test in hand before you go in for the appointment. How many times do you go see the doctor, only to have him order the labs, and then have you make another appointment a week later? How frustrating is this, when you already had to wait a week or two to get in for the first appointment?

I realize that there are situations where the doctor must see you first before determining what tests to order. However, there are myriad situations where that requirement does not hold. If your GP is referring you to a specialist, for example -- the preliminary guesswork should be out of the way. Or if, like me, you have a chronic condition that requires periodic monitoring. Get the labs done a week or so before your appointment, and it will make your appointment that much more productive. Ask about getting labs done beforehand whenever you make an appointment that might possibly require labs! The doctor's office can fax or mail you a lab slip, or just call the order down to the lab.

Labs are hard to get if you're a "tough stick." I have teensy-tiny little veins that just won't come up, or will roll or blow out if not handled just right. I have blood drawn frequently at different facilities, so I always tell the tech who is doing the draw these important facts, and they invariably draw me using a "butterfly," a smaller needle that regulates the vaccuum pressure from the tube so the vein won't collapse when the tube is attached. A couple of tips: relax your fist when the needle's going in; if your muscles are contracted, it will make the vein walls stiffer and the needle is more likely to bounce or glance off. Also, stay hydrated before a draw, even a fasting draw will usually allow as much water as you want -- but if you have a question about it, ask to be sure. If you're dehydrated when a blood draw is ordered, start drinking water immediately, because even a little bit will help.

Labs don't give you all the information you need. I have in front of me a copy of my most recent labs. The three columns of interest are labeled "test," "result," and "limits." The first column is the name of the test; the second the results, which is usually the amount of the first column found in the sample; the third column gives the reference range for "normal" values. That's all well and good, and certainly a ton of information is conveyed in the typical "CBC" (complete blood count) test. However, having survived an advanced education at a science-driven university, I have a couple of questions that I have never seen answered on any lab report:
What's the margin of error? Anyone who's had a decent high school science course knows that no measurement is perfectly precise, and that the amount of the mistake, the margin of error, is determined by the tools or methods used to make the measurement. We typically hear the term margin of error with respect to public opinon polls, and it's included with poll results so poll readers can make a valid interpretation. If two candidates poll at 42% and 46%, but the margin of error is +/- 4%, then all the poll is showing is that the candidates are tied. Back in the world of blood tests, the amounts of "stuff" being analyzed seem vanishingly small, but the margin of error is still relevant. Take, for example, my WBC count: 4.1 x10E3/ul; the reference range is 4.0-10.5. 4.1 is sitting at the very bottom of the reference range; 0.2 ul less, and I'd have been flagged as deficient, and my doctor would perhaps be ordering up something-or-other for me to try and increase my immune capability. With a measurement on this scale, a margin of error of +/- 0.2 ul would actually be pretty good; it's likely to be even higher -- but it's never reported. So how many people are really outside the reference ranges, but not being treated, because the margin of error is not considered?

Forget the reference range: what is the median, or most common value? This is the one that really kills me. Take my WBC count again, "normal" at 4.1, although clearly at the bottom of the 4.0-10.5 "normal" range. What I want to know, but am never told, what is the WBC count of a healthy 42-year-old woman? That range is pretty big, but I've seen worse; a friend is having her son's growth hormones tested, and the reference range was 50-300! Her son's was 52, and she figures that probably explains why he hasn't been growing, but that 52 is still "normal." The example nearest and dearest to my heart, of course, is TSH, or thyroid stimulating hormone, which until recently had a reference range of 0.5 to 5.0. However, more than 95% of the euthryoid population has a TSH between 0.4 and 2.5, and most thyroid patients feel best when their TSH is maintained right around 1.0. Isn't that a significant data point that should be considered when comparing an individual's results?

It seems that, to the typical practitioner, the distribution of values throughout the range is constant -- a straight line -- whereas the most common distribution of values would most likely be more like this:

If I'm feeling crummy and my values are at one end of the range or another, it seems to me that I might feel better if treatment could bring my values back to that central "X."

Finally, and perhaps the worst thing about labs: Doctors diagnose lab results, not patients. It has happened to me, it has happened to countless friends and aquaintances -- I know there's something not right with me, but "the labs are all fine, there's nothing wrong," the doctor proclaims. Perhaps we're patronized with, "You're just stressed, you need to relax." The last time "the labs were fine," I had cancer. The time before that, I was becoming thyrotoxic because I had low serum ferritin and adrenal fatigue.

Two things to keep in mind, if "the labs are all normal": first, "within range" is hardly the same as "fine", since we can easily see that the references ranges do not reflect the optimal value that a healthy person would have. Second, "the labs are all normal" is not the same as "all the labs are optimal." When my doctor tested me and declared me "normal", he was looking at my thyroid hormone levels, not my serum ferritin or adrenal hormones. Sure, what he looked at was fine, but he wasn't getting the complete picture.

Patients with chronic diseases or difficult diagnoses should actively manage their labs and question the easy interpretations. Ask questions if you don't like what your doctor is telling you, especially if you're hearing "your labs are fine," but you are not. Always get copies of your test results! If I had not requested a copy of my labs last spring, my thryoid cancer would have gone undiagnosed for who knows how long. Doctors manage hundreds of patients, but you only have to manage a handful of doctors. So do it!

Here, by the way, is a site that explains a lot of the typical blood test terms. It's pretty technical, but a good reference, anyway.

Wednesday, October 05, 2005

sounding board v counselor

I have trouble sometimes listening to friends talk about their problems. It's not that I don't want to hear them whining, usually -- it's that I have to bite my tongue and not give them advice.

Online, it's paradoxically harder to be silent, especially when you see a friend walking into a situation that closely mirrors nightmare scenarios she has already survived multiple times in her life. Sometimes we're so close to what's happening in our own lives we can't see the patterns, how life keeps throwing the same problem at us, over and over, until we get it right.

On the web, I've got the distance, I can take the long view. I can see it coming a mile away. Usually I don't say anything but today I did, and I'm afraid that I've hurt or offended someone I respect and admire a lot.

I don't have the means to take back what I wrote, and even if I did, I wouldn't. I didn't mean to be harsh but maybe I was, I don't know. I wrote out of concern for a friend, someone I don't want to see hurt or stressed anymore than she already is.

If I was out of line, I'm sorry, but my thinking goes like this: on little things, the day-to-day nitpicks and quibbles, a good friend will just suck it up and let it go. Be a sounding board, as it were. But it's the responsibilty of a good friend to warn you about the big, looming pitfalls that you can't see! Especially if you keep falling into the same pit over and over again. On the big issues, friends should be counselors.

Ah, but how can we tell what's important and what's trivial? We always want to judge people by what they say, but the real yardstick is what they do, and that may be where I crossed the line in my comments to my friend. Her actions say one thing... maybe, while her words are on a whole 'nother plane entirely. Actions, like words, are always subject to interpretation.

I keep experiencing the same epiphany lately: we all live the lives we want. Sure, there are constraints we have to work within, but it all boils down to the same thing. If I really valued a good night's sleep, I'd get to bed earlier. But it's clear that I really think staying up reading and writing is a lot more valuable, because I consistently do that instead of sleeping. Then again, I decided that I wanted to swim and arranged things so I could. Eventually my swimming will get to the point where it forces me to get to bed a decent hour, so I figure I'm sort of converging on a good routine. I do want to be healthy, I just can't get there all at once. That attitude is reflected in my contradictory actions.

There's a common thread of self-sabotage I see in my friend, and in myself. We have to reach that point where we are so rock-sure of what we want that we just do it. It is very hard to get to that place, especially when we keep putting obstacles into our own paths.

I guess I'm left wondering if it's ever worth it to give unsolicited advice. It's such a dicey proposition that I've developed a real-world method which involves wrapping it up in assurances like this: it's only my opinion, and of course you have to do what's right for you, but I'm concerned and here's why and please let me know if I can do anything to help. I probably should have done more of that today in my comments, but it's too late now.

And I'm thinking quite clearly now of a few situations in my own life when I wish someone had said something, anything to me when I was doing something monumentally stupid. Maybe, most likely, I wouldn't have listened, but at least they would've tried -- and after the fact, I would've appreciated knowing that they cared enough to do that.

It doesn't take much effort, really, to reach out to someone in a caring way and say, "Hey, think about what you're doing here." The risk you take as a counselor is worth it, I think, as insurance against the pain you'll feel later, watching a friend suffer when maybe she didn't have to, when you decided to be a sounding board and just let it go.

cooking day

I've had a brutal sore throat for a while now, and so am drawn to making soups. Today, in addition to making my kids' favorite Italian Herb Bread, I tried a version of a recipe my friend Casey sent me a few years ago, making my usual tweaks and revisions. This is a very forgiving recipe, as most soup recipes are -- if you like more of one flavor or less of another, go with it!

The original recipe called for more wine, but I didn't have much left, and decided to go for it anyway -- and it came out great!

Casey's Seafood Soup, with tweaks

1/2 C olive oil, or enough to coat the bottom of your stock pot
2 medium onions, diced
2 tsp garlic, minced (or more, to taste -- I use about twice this amount)
2 tsp dried basil (twice this amount, minced, if fresh)
2 tsp dried oregano (twice this amount, minced, if fresh)
2 bay leaves
4 plum tomatoes, diced

1 C white wine (really, any will do...)
1 28 oz can plum tomatoes, crushed or whole
32 oz chicken, fish, or vegetable stock

2 lbs mixed seafood: shrimp, scallops, calamari, mussels
(Trader Joe's makes a great frozen seafood blend that is perfect for this recipe)

Put the first 7 ingredients into your stockpot and cook gently over medium-low heat until the onions are translucent and the tomatoes are soft. The longer you cook this, at this stage, the better, IMO. Some people are fond of crunchy onions, but I am not one of them, especially not in a recipe like this.

When all those ingredients are cooked down and fragrant and lovely, add the wine and let it simmer for about 5 minutes. If you want a more brothy soup, you can add more wine, but be sure to let it reduce to concentrate the flavor -- how much is up to you. I have made this recipe with an entire bottle of wine, but reduced it substantially, probably by half, and that gives the soup a very nice depth of flavor. But it also takes longer to cook!

When the wine is reduced to your liking, add the tomatoes and the broth. Rinse out the tomato can with about a half-cup of water and add that to the pot, too. If you're using whole tomatoes, you'll want to break them up into smaller pieces for easier eating. Then just let it simmer quietly until about 15 or 20 minutes before you want to eat it.

At that point, add the seafood, and be sure to keep the heat gentle! Do not let it come to a boil, or your seafood will be rapidly rubberized. In about 15 or 20 minutes, though, it will be perfectly cooked, and your soup is done.

All in all, you can make this in less than hour, I'd say, depending on your chopping skills. It's well worth the effort. I think some day even my kids will like it, hopefully as much as they like that bread!

3, 2, 1... bread!

Those numbers represent:

1) the closest hour (A.M.) at which I went to bed over the past 3 days -- and --
2) a handy mnenomic device for remembering the recipe for pizza crust/bread that I like to make for my kids, which goes like this:

Italian Herb Bread

3 cups unbleached, unbromated white flour (I like King Arthur best)
2 T olive oil (not extra virgin, just regular)
1 C water, warmed to about 100 degrees (about 30 seconds in my microwave)
1/2 tsp salt
about 1 tsp honey
1 packet "Rapid Rise" yeast
dried Italian herb mixture, or dried oregano, basil, rosemary, thyme

Here's how I do it:
1. Drizzle the honey into the warm water and stir to dissolve, then add the yeast to that to "proof" it. Let sit about 5 minutes for the yeast to activate and become foamy. If you don't see any change, your yeast is dead, and your bread won't rise. It's worth it to take the time to prove your yeast!

2. Put the flour, olive oil, salt and yeast mixture in your mixer's mixing bowl. With a dough hook, mix at low speed until the ingredients are just mixed, then knead at medium speed for about 2-3 minutes. (If you want to do this by hand, knead for about 5 minutes.)

3. Turn the dough out of the mixing bowl and knead by hand a few times to finish.

4. Drizzle some olive oil in a bowl and brush it around the inside. Pop the dough into the bowl and turn it to coat with oil on all sides. Cover with plastic wrap and set in a warm, draft free place for an hour to an hour-and-a half.

5. Punch down the dough. Lightly sprinkle with Italian herbs (I like rosemary a lot, so I add extra rosemary) over the entire surface of the dough, then fold the dough over itself and flatten it out again. Sprinkle again with herbs, then fold and flatten again. Repeat the sprinkle/fold/flatten steps at least 3 or 4 times altogether. Obviously the more you sprinkle, the stronger the taste of the herbs will be.

6. We like to form this bread into two small round loaves: separate the dough into two equal parts, and then pat it with your hands to form a slightly flattened ball. Place the two round loaves about 4 inches apart on a baking sheet lined with oiled parchment paper or a silicone baking mat. Coat the loaves lightly with olive oil again. Let rest for another hour or so to rise again, then bake at 350 degrees for about 45 minutes to an hour, depending on how dark you like your crust.

Let it cool at least 20 minutes or it will mush down to nothing when you try to slice it. Of course you could just rip it apart! It is very simple and tasty -- not at all time consuming, you just have to remember to start it about 3 hours before you want to eat it.

Monday, October 03, 2005

fed up already

Endless negative buzz and chatter on my usual reads today regarding the nomination of Harriet Miers to the Supreme Court.

Usually I appreciate the insight and knowledge that the blogosphere provides on "big picture" situations like this. But today I am just not in the mood. It has only been a few hours since Miers' nomination, and honestly no one knows much about her. Already everyone on the conservative side is whining and proclaiming doom. Maybe she'll suck, I don't know. Maybe Bush did just appoint her because she's his friend -- I'm sure how well he knows her did factor into his decision, but usually he is a very good politician. This decision doesn't seem to fit with what we know about the president, although he's done exactly this thing before in choosing Cheney to be his VP.

Anyway, everyone's going to be all grumpy about this for who knows how many weeks, and I'm already bored. I know it's important to ground the Court and I have no idea whether or not Miers can do that. I just know there's going to be a lot of mud slung around and it ain't gonna be pretty, and it ain't gonna be fun. We don't need all this negativity.

One upside: until this mess is settled, maybe I'll have more time to do stuff offline.

short takes

7.5 days completed on the Nystatin treatment, 2.5 to go. The stuff tastes vile, but only after swallowing. During the swishing part, I just taste the minty flavor they add to it (I'm assuming). After swallowing, the bitter nasties come through. Also: no change in the red spot on the tongue.

My blood work came back "normal" last week. Ha! "Normal." Who are they calling normal? Anyway, I never trust that assessment (the bloodwork that eventually led to my cancer dx was all "normal," too), and need to get a copy of the results to bring with me to Houston anyway. Remember to call!

I always feel taller after yoga class.

I am completely besotted with HBO's Rome. Great compilation of real historical figures and completely fictional characters, all interacting in a very real-looking recreation of ancient Rome. What makes it, though, is the incredibly consistent, high quality of the acting. Outstanding cast all around, but the boys are my favorites: Vorenus, Pullo, and Octavian. Way too much good stuff.

Contractors don't meet remodelling deadlines for businesses, either: Border's new cafe was supposed to open on Thursday, but we didn't get a chance to go on Friday after school as we usually do, because DS2 was sick. So we popped down this afternoon to try it out, and... it wasn't open yet! Much disappointment all around, but I was laughing at myself for believing that it would be done when they said it would be. To their credit: it looked like construction changes were complete, and they were just training the staff. However, "Re-opening Sept 28" is nowhere close to "Staff training on Oct 2." Next time: call first!

DS2's virus only lasted that one day, Friday. He was well enough to do a Peter Piper Pizza birthday party and Mass on Saturday, and just fine for the photo shoot we did in the late afternoon today with Lisa Maynard. She's fantastic, but I still hate pictures of myself -- there's nothing for it. These guys, however, are simply gorgeous:

Photograph by Lisa Maynard

Sunday, October 02, 2005

too many mixed feelings

Generally, I love getting mail when it's not a bill. It's such a thrill to get a card or a few photos, and if I'm ever lucky enough to get an actual letter, that's a rare treat. I even enjoy browsing through catalogs -- Lord knows I get enough of them after so many years of shopping by mail and online.

But this Friday's mail brought an unexpected big fat envelope to me, from M. D. Anderson. It's an orientation package and includes the most detailed health questionaire I've ever seen. It includes a very nicely produced full-size glossy-paper brochure that gives an overview of what to expect there. It's formatted with a lot of professional photos and testimonial quotes from happy patients. All in all, it's designed to generate confidence in the decision to go to MDA, and it accomplishes that task handily.

Leafing through the brochure, I came away with the feeling,These guys really know what they're doing, and they will take good care of me.

That's the upside. The downside came quickly on the heels of that thought:Wow, my condition really must be serious if I'm going to MDA for treatment.

Well, duh, me. (smacking self upside head)

Still, I spend a lot of time telling myself that I'm fine, because I really am fine. If I weren't fine could I do everything I've been managing to get done? If I weren't fine would be my weight be a stable as it has been? (yay!) Would I be able to swim and do yoga and not need to collapse immediately thereafter? I'm out of the habit of thinking of myself as "sick" or even "recovering." In my own head, I'm already well.

Problem is, in my neck (heh), I'm not quite there yet. It is really hard when I what I want (what it seems that I actually do have) is so different from what truly is.

I'm glad to be going to MDA for treatment. I'm also starting to freak out (not hyperbole) because I have to go. I'm doing OK getting things done but I have just these past few days reverted to my old insane habit of staying up way-too-late. That's going to have to stop. I know I'm just scared that I don't have much time left, and I don't want to waste time sleeping, but that's just ridiculous. Reasonably, I could go to Houston and have surgery and maybe another round of RAI in the late fall, and those treatments would put me in remission. Or maybe they'll say,let's just keep an eye on things for now, since my Tg is really quite low.

I am perversely hoping they'll do surgery just so we can get it all out, and be done with it. I have a lump in my throat that is highly reminiscent of my original thyca. It affects my swallowing and my voice in similar ways. I got my copy of the final radiology report from June and it showed 2 spots in the right cervical chain and one in the thyroid bed or upper chest, which is slightly different from the first impressions we discussed on the day of the scan. The u/s showed a largish mass in the thyroid bed as well. So there's most likely something still going on there that's going to take a scalpel to get rid off.

So let's just cut it out and be done with it! I have a life to get on with, here! a good part of me is thinking, but then all the surgery-related phobias pop up again and I literally feel sick at the thought of going for more surgery. It's going to hurt, I think. Well, yes, of course. There could be nerve damage this time. Swallowing and speaking will be affected at least for a little while, maybe a lot longer. I know I'll feel crummy for at least few weeks. Who knows how long it will be before I can drive, or go back to swimming, and back to yoga?

Of course I know it's stupid to go through all this especially since I don't know whether I even need surgery. On the other hand (of course there is one here, too), it's kind of good to get all the anxieties out and identified so I'll have them all lined up when the word comes down that I need surgery. And if I don't need surgery, profound relief! I have to admit, though, I just can't imagine that being the outcome.

I think I'm going to ask for anti-anxiety meds if I need surgery. This is the kind of situation where anxiety is not going to help me. Having surgery is not something I need to work through emotionally. I just need to do it. If I need a little Ativan to get me through it, that wouldn't be the worst thing.

more pro-life at the movies...

Caught The Forgotten off the TiVO tonight. Not exactly a great movie, but not completely bad, certainly not one of those "There's 95 minutes of your life you're never going to get back," movies.

The problem with saying that, of course, is now I'm thinking about how wretched it really was. Nothing makes much sense, really, but there is one effect, used four times, total, that was shocking each time it was deployed. The ending, of course, completely sucked. On the whole I can't recommend it, but it still got me thinking.

The whole premise of the movie is that the mom, Julianne Moore, refuses to stop mourning her son who was killed in a plane crash 14 months before. She can't forget him, even when everyone around her is telling her that she has been delusional and made the whole thing up, and all physical evidence of her son's existence has vanished. At one point the Bad Guy forces her to remember the very first moment she saw her son in the delivery room. The Bad Guy needs to steal that memory, and supposedly every other memory stemming from that moment, so that she finally will forget.

What happens, of course, is that she remembers being pregnant: "I had Life inside me," she says. And from that point, of course, she's able to remember everything, even though the Bad Guy had thought he'd got it all. This is one of the major plot holes that makes the movie suck: why didn't the Bad Guy take her back to the moment the pregnancy test was positive, or when she first realized her period was late? Because clearly, the Bad Guy believes Life begins at birth.

Silly Bad Guy, don't you realize that Life begins at conception? Julianne Moore certainly preached it in this movie. It was the reason she couldn't forget her son, and the only reason she gets him back in the end.

I don't know how actors and writers and the Hollywood crowd in general reconcile the pro-life messages in the movies they make with their own beliefs. It's not ironic, it's weird. Maybe they're just "playing to the audience" and giving Middle America what it wants to see -- but even then, there's some realization that most people see a pregnant woman and think, "There's a baby in there." Most likely, though, they don't bother to think through to this level, and figure that characters like Moore's here make for a "good strong story."

The story here was so riddled with plotholes that it barely held together, but the one thing that did consistently work throughout was that mother's faith in her memories. The only reason that worked is because her feelings reflected the feelings of every mother sitting in the audience: I had Life inside me.

Even the Hollywood types understand that's not something you can ever forget.

Saturday, October 01, 2005

the great paper purge of 2005

I was up until well past 2AM this morning, sorting through and discarding more than 2 years of my kids' school papers. It really is astonishing how much paper they generate. What's even more astonishing is that I managed to somehow cram 2+ years of work into the plastic chest-of-drawers I bought at Target -- plus the overflow on the desk and kitchen counter, of course.

It was the sheer volume of the overflow that finally got me out of my complacent stupor with respect to the ever-growing encroachment of the vast paper pile on all of my workspace. My desk I had long since ceded, but when I started having trouble finding space to make a salad, I knew that Something Must Be Done.

I knew it was going to be a big task and so I kept putting it off. I also knew it would be impossible to accomplish if the kids were around. I had idly thought of starting it after the kids went to bed last night, but then got sucked into something or other on the TiVO. I can't even remember what it was, so it mustn't have been too compelling.

All I know is, I lounged around for quite a while and only stirred myself when it was just past 11, and then for some reason I will never quite understand, it seemed like a good idea: I started sorting the papers on the kitchen counter. Then I just thought, what the heck, and scooped up everything off the counter, and the desk, and then camped out by the chest-of-drawers, and went through everything.

I was surprised to see how much DS1's handwriting has improved, and had to smile at some of the stories from his first grade journal. I was overwhelmed by the sheer number of pictures DD had drawn for me, inscribed either "to mom from [DD]" or "i (heart) u mom" or "i love mi mom" or some combination of these. I kept a few, of course, but to keep them all would be insane. DS2 of course lags his older siblings in "stuff", but even he has a sizeable collection of photos and keepsakes from preschool.

I'm trying not to feel guilty for discarding so much. I kept the final report cards and any interim report with interesting comments. I kept the award papers, and the special reports (although I couldn't find DS1's Gila Monster report, it had better be around here somewhere!). But there's no reason to keep every single math worksheet, or every spelling test. We'd never make it through elementary school with a livable home if we did.

So now the chest of drawers is nearly empty, ready for this year's papers. There are some things from previous years that I'll be moving into memory boxes, but now that the overflow has been dealt with, it's OK if I don't get around to those boxes immediately. Now I have a desk and a kitchen counter to work on. Yay!