next...

M. D. Anderson in Houston won't give me a second opinion unless I re-register as a new patient and make an appointment to come in.   I'm not going to Houston over this.  At least not yet.

But MDA opened a new center teamed up with Banner Hospitals here in the valley, and they have a surgeon on staff that is experienced with recurrent thyroid cancer. 

I have an appointment with him on December 29.  The really cool thing is, because they're MDA, they have access to all my old MDA records.  And because they're also Banner, they have access to all my scans, too.

Just waiting on the insurance to clear, which it should... then we can put this to rest.

bah.

After repeated calls to my endo's office, the nurse/manager finally called and left a detailed message on my cell phone.  The doctor had conferred with my  usual nuclear medicine doctor, who pulled the film and agrees that it's just a calcified node.  They're all happy with that and say I don't have to do anything for a year, when I'll repeat the Thyrogen testing cycle as usual.

I don't want to complain (really, I don't), but this is bunk, and it's contrary to the ATA's long-term management guidelines for differentiated thyroid carcinoma, too, which indicates I probably should've had another dose of RAI.  (Tg>2, dxWBS positive).

I guess the thinking is, the scan was only slightly positive, and watchful waiting is a recommended strategy for low-risk cases.  I don't think I'm a high risk case, but I don't know if I'm low risk.  I think I'll send an email to MDA tomorrow and see if they can look at the scans.

wearing & tearing

No news since my appointment last week.  I'm not surprised, although I do come home every day and check the answering machine for calls from the doctor.

I try not to think about it, and generally do a pretty good job of keeping it tucked away, but that takes energy.  It's like a weight on me, one that I have no way of knowing how long I'll be squished under.

It wears on me so.  I hate all my clothes, my hair (not-so-recently cut shorter than I'd wanted) looks stupid, my class last night left me disappointed and everything just seems off.  Being tired doesn't help.

***
I managed last weekend OK: Halloween was mostly driving the 2 younger kids to and from events with friends, so that spared me from dealing with trick-or-treaters most of the night. Saturday I took the 2 older kids to Sozo to hear a 15-year-old blues guitar genius, and Sunday the entire family went to see Ballet Arizona's Swan Lake with the Phoenix Symphony.  It was glorious, and then we went to Euro Cafe for dinner because DD's birthday was fast approaching. 

She requested meat loaf and mashed potatoes for dinner, with a birthday apple pie since she doesn't care for most cake.  I spent most of the last 3 days cooking, to good effect -- the pies came out beautifully.

***

The weather has finally, finally cooled off enough to wear sweaters. Not-summer seemed to take forever to get here, but I know that's subjective, it never cools off until November.  It's amazingly delightful outside now, and quite cool in the mornings.

***

I have a week off of grad school classes, which is good because I have a paper and all sorts of other stuff to do.  So far my lowest grade on an assignment has been 17/20 and I have no problem with that grade. I didn't have time to spend 4 hours writing up a super-detailed lesson plan, so I spent about 30 minutes just giving the broad strokes.  I did what I could in the time I had, and that has to be enough.

***

Even though I'm sure, 100% positive, that whatever I've got isn't going to kill me, or even have any lasting long-term effects on me, I do have a feeling that there's going to be some disruption along the way somewhere, and I'd like to know what that will be, when that will be, and how recovery will go.   I can't manage expectations when I'm in limbo like this, but that's how my mind works best, so I'm constantly hitting this wall of No Information.

***

Time to put all this back in its box & go to bed.

mixed messages

In a completely unexpected result, my tumor marker decreased to 3.0 from 5.5 in December 2013.  That's a surprise, and good news. 

But still a surprise, because the scan was positive, with "slight uptake" in what the radiologist diagnosed as a calcified node in my mediastinum.  My endo is not complacent about this diagnosis, and I agree: if the node were calcified, there wouldn't be any uptake there.

Plus, and I told her this story, this exact same thing happened when I went to MDA in 2006 when I had my recurrence.  The radiologist read the CT and said "calcified nodes," my surgeon took one look at it and said, "I don't believe it.  That's cancer," and he took them all out.  The surgeon was right.

The endo also completely rejected the thymus gland theory, saying it is highly unlikely for it to start showing up now. I've been dealing with this cancer thing for years, and there has never been any indication of thymus activity before, and it doesn't make sense for it to just show up out of nowhere.

My collarbone was troubling me something fierce on Wednesday (the day of the appointment) so I didn't forget to tell her about it.  She expressed concern, and after doing a search on "bone pain" (because that's what it is), I can see why -- there are basically no benign causes of bone pain, and cancer is one of the leading causes.  I really tried to brush it off as probably scar-tissue related or possibly just my fibromyalgia acting up, but the endo basically told me to stop: You have a serious condition.  We should check this out. 

See, I know it's true, but I like to pretend it's not.

The plan, for now: the endo is consulting with my usual nuclear medicine doctor and seeing what he thinks of the radiologist's diagnosis.   I will probably go for a quick chest x-ray to make sure there's nothing dire going on with the collarbone. (I asked about that -- wouldn't it show up on the scan? Not necessarily, especially since you said it's gotten worse since the scan. Which it has, going from intermittent to constant and sometimes extremely painful. Sigh.)  Re-test in 9 months -- there goes the first 3 weeks of June.  But no definite plans just yet, just waiting to hear from the doctor, again, and get my marching orders.

student life

So I'm taking two classes at NAU, one on the nature of science (what we call NOS) and the other on teaching and learning science, which is the methods class I wish I'd had during my teacher certification days.  (That methods class was the biggest disappointment of my cert. program.)

It turns out, of course, that 2 grad student courses is substantially more work than 2 teacher cert courses, but it doesn't even feel like work because I love all the reading and assignments.  All my feedback has been so positive I want to go back to school full time, especially after taking a quick trip up to Flagstaff over fall break so I could attend class in person, which was a wonderful experience.

Timing is also perfect for me to be super-busy because it helps keep my mind off not having my test results yet, and not having them until next Wednesday.  I get asked how I can stand waiting so long to find out and I just say, I put it away, it's in a box.  There's nothing I can do about it so I might as well not think about it.

That all sounds so well-adjusted that I can almost believe it, and I keep it "in the box" most of the time except I've got this weird pain in my collarbone that's more on than off lately, and of course it worries me. Until I put it back in the box, and try to keep the lid on it.

spect/ct

After this infinitely long week, I had my whole body scan today.  I have a new nuclear medicine doctor, who works in the same practice as Dr. S.  I have the impression Dr. L has retired or moved on in some other way, since his card was not available in the reception area.

Dr. Y was, at first, pleased with my scan and said it was clean.  Then she asked me about my Tg and my history and when I explained she paused for a moment and pointed me to a faint spot somewhere in my chest.  "I thought it could be thymus activity," she said, explaining that's common for younger people, and not unheard-of for 50-somethings like me. "But given your history, I want you to have a spect/ct scan so we can try to get a better look at where that is."

This was new for me. I asked the technician many questions, and he was very nice and forthcoming about discussing it with me.  The spect/ct picks up the same RAI emissions as the WBS does, but it combines them with ct data to give a three-dimension image.   For comparison, here's a WBS image: 

 

You can see that it's basically a pointilist, 2-dimensional collection of I-131 emissions.  The image below is the monitor from a combined PET/CT and SPECT/CT scanner.  It constructs a 3-dimensional view that you can drill through, combining structural data with the emissions information from that same RAI. 

 

I don't remember if my hospital had this exact scanner, but the display was very similar.  You can do cross-sections both height- and width-wise (transverse and sagital views, I think...) and you zoom in and out.  There is a truly astonishing amount of data there.

Nothing really leaped out at us in our quick once-over - of course, neither of us are trained to read these things, but the tech has a lot more experience than I do.  He zoomed around a bit and found a spot in my upper left chest and we thought that might be it, so he went over to his other monitor and pulled up my whole body scan image and we compared the location of the faint spot there to the location of the bright spot on the spect/ct.  Our consensus was that was probably the troublesome area, and it appeared that there is some activity there.  It was an anomolous green spot on the display, but not very bright.   But considering we didn't see green literally anywhere else, I tend to think that was it, but it was really hard to tell where it was, and it was impossible to say what it means. (I wish I had had the foresight to snap a couple of photos with my phone, but I don't know if that would've been allowed.)

We called Dr. Y as she had gone to another department at the hospital, and she took my number and said she would call me this afternoon.  That was four hours ago, and I still haven't heard, and I feel like a complete idiot because I forgot to ask if I could go off the LID!

Odds are we aren't going to do anything right away anyway, but I'd rather have RAI than surgery so I'm thinking it's smart to keep that option open. So I'm still on the LID for now, even though I would really like to go to Joyride and get their trio of different seafood tacos that are so incredibly delicious.

I am so making jambalaya when I finally get off this diet!