update

Went in for Esther’s iodine thingy tonight.  She swallowed 6 capsules of some sort of radioactive material and has to go back tomorrow night for a scan.  Tech said she might avoid kissing her boyfriend, but otherwise we shouldn’t worry. 

 I don’t know what I’m doing with these pics below.  If you click on the thumbnail, you get a fuller pic of Esther, with all the wires and cool stuff.   I can’t get over how cute she was in the hospital.  I wonder what that means.  Do I have that Munchhausen by proxy thing?

http://www.kidshealth.org/parent/system/ill/munchausen.html

 Nah! 

One more post-op photo from Emma’s cell phone

Waiting

We’re waiting for Esther’s radioiodine scan, and I’m waiting to hear about a job.  I don’t like this very much.  I need a job, Esther needs health insurance, Esther needs the rest of this cancer stuff wiped out of her system.  If I could just have those three things. . .  or even just one. . .the last one. . .the cancer out of her system.  A job would help feed and house us though. 

I’ve been meaning to write about activity on the pond.  The baby geese are getting huge, the size of the ducks, and the ducks are having duckings, at least two sets.  There is one single mother goose on the pond, and I wonder what happened to her mate.  Tonight, I walked around the pond with the dog and some stale bread.  I tossed some in the water, and huge fish came up out of the water to eat it.  Cola ate some too.  Then a pair of geese and their overgrown gosslings came by, and father or mother goose stood and hissed at the dog  and approached aggressively while I quickly tossed out the rest of the bread in one big chunk.   The gosslings and a the fish played tug of war with one soggy piece.  

A vet friend of my dad’s said he’d had a number dogs in his clinic injured by parental geese, chunks of furry flesh ripped right off.   I had no idea they could get that nasty or cause that much damage. 

For more info on geese and what not to do, see:   http://www.dnr.state.oh.us/wildlife/Resources/goosedamage.htm

 Okay, no more feeding the geese.

I spend my days this summer walking the dog, and riding my bike.  I have too much time on my hands.  I’m having trouble focusing on reading or writing.  I’ve always been that way.  I think I’d do well on Aderall or Ritalin.

Kotie and Esther–Post Op

Dairy Queen

Emily’s New Glasses

TSH (thyroid stimulating hormone)

Just got a call from Dr. Paulson.  Yesterday’s blood test shows TSH levels are plenty high.  Supposed to get a call to set up an appointment for a scan today.  Sooner the better.  Now I can worry about what the scan will show. 

Raised TSH levels means pituatary gland is working hard to stimulate the thyroid to produce thyroid hormone.  Since it’s finding no thyroid, TSH levels are way up, and whatever thyroid-ish (now synonymous with cancer or potential cancer) material will light up like a Christmas tree after being given a trace of radioactive iodine, which will be absorbed by any bits of thyroid/cancer material.    When they see how much is there, they will zap it with radioactive iodine treatment.  Unless its too much, or too big.  Then some other game plan, such as surgery to remove lymph nodes in the chest wall.   But as Dr. Paulson says, that’s getting too far ahead—again.  Still, she’s got a lot of cancer cooking.  Or maybe it just seems that way to me. 

I’m glad we’re moving forward.

Follow up appointment

Esther saw Dr. Paulson today.   Pathology report (if I got this right in my notes), show a 3cm mass on the left side of her thyroid and a 1 and a half cm mass on the right, both cancerous.  4 out of the 5 lymph nodes removed were also affected.   This is not supposed to be surprising but all of it still bothers me.  The size and lymph nodes and her age and the likelyhood that she’s had this cancer for a long time makes me nuts.  I’m going through the why-didn’t pediatricians-suggest-possibility-of-tumor/cancer-before shit again, and even asked Dr. Paulson:  Why did no one—at U of I clinic where the girls went regularly; the doc in Coralville, where she suggested we check her thryoid hormone levels once every six months, and the pediatrician in Wyoming, who thought it was not necessary to check her thyroid hormone levels every six months but did it anyway when we first moved here (Esther 15 at the time)–why did none of these people suggest or suspect cancer or a tumor considering the roundness of her neck, until we saw Joanne Rosema.  “Joanne is wonderful” Dr. Paulsen said.  Even Dr. Paulson did not understand why docs never questioned it.  “Everytime we see a lump in the neck of a child we suspect cancer.”   So, why did no one else? 

I’m tempted to hunt down Esther’s records from U Of I, and that Pediatrician in Coralville and the one in Iowa (I have to find their names).   Even Dr. Foe, who saw Esther less than six months ago with a sore throat and swollen lymph nodes seemed not to notice her neck (did I say anything about it?).   I do recall asking Esther several times in the last six months or so “do you think your neck has gotten bigger?  Are you sure that’s not bigger?”  So, maybe it was bigger.  Obviously. 

I feel guilty.  Why didn’t I suspect something, or do something?

I’m going to go crazy with the we-should-have-known or done-something-sooner shit.   This stuff was too big and spread to far as far as I’m concerned.  I read on-line, somewhere (I should note where) that size of the tumor is directly related to prognosis:  Esther’s was way bigger than average and on both sides. 

 I could go on and on.  Blood test today too.  We’re waiting for TSH levels to rise so they can do the iodine scan, an outpatient IV procedure.  Then the treatment, also outpatient.   I was confused about spread to lungs, I think.  The concern, or possibility is affected lymph glands along the tracheal branch in her chest.  I think radioactive iodine would kill it off, and they saw nothing significant in her chest X-rays. 

Esther is now considered a “cancer survivor” and must NOT have lapses in health insurance.  I’m just not sure how long Chuck or I can keep her covered, until 19? 20?  I have to find out.  She will never qualify for disability or life insurance.   Who knows what else.  All this according to Dr. Paulson and a note from a friend today who also stressed the importance of Esther’s always having coverage.  Within the next couple of years, it may be up to Esther to stay covered, either through her own employer or school.  So, now it seems more important than ever that this kid get a high school diploma.   Things get overwhelming sometimes. 

Emily’s concert: a slideshow

Essays

Link to:  Visitation Rights

and  The Shape of a Goddess

As soon as I figure out how to set these up on the side of the page with the other essays (See Essays) I will.