I'm radioactive!

(written around noon today)

I'm in the middle of my week of basically living at Washington Hospital Center (7 trips in 8 days), the dosimetry week. Monday and Tuesday I came in for Thyrogen injections to boost my TSH levels so my thyroid cells will absorb more iodine, and today I got to talk to a nuclear physicist before swallowing 2 mCi of radioactive iodine. That was at 11am. Now I'm just hanging out in the courtyard (where the weather is perfect) until 1pm, when they'll do a scan and collect some blood. Had to fast before the appointment this morning, so I'll get my first meal of the day when I get home, around 2:30. I come back Thursday, Friday, Saturday, and Monday for more scans & blood draws, then get the rest of next week off. I have to follow some radiation safety precautions for a couple of days, but this is a really low dose, so it's a lot less than what I'll have to do in a couple weeks for the big dose.

I've been on the low-iodine diet for 2.5 weeks, still have 2 to go. It hasn't been too hard, especially since my mom has cooked so much for me (she's still in Richmond, but she filled the freezer with stuff in June, and it's been great).

Other stuff that's been going on that I don't think we've mentioned:

The last week in July we took a trip to California to stomp on the old stomping grounds and see our Brass Monkey friends out there (plus a couple non-monkeys). It was great. Kids did fine with the travel, we got to visit Berkeley Bowl & Crixa Cakes, Rowan got to see the house where we lived when she was a baby, we spent an afternoon at Half Moon Bay (for the first time ever!), we walked around Lake Anza at Tilden, and we spent a whole weekend in Inverness with our Monkey buddies.

This past weekend I had a lovely time in Richmond with Sapna, Meredith, & Joy (who came all the way from Seattle for the occasion). Sapna's 34 weeks pregnant and on bedrest, so we did not go out on the town quite as much as originally planned, but we sat and talked and organized baby stuff. We need to all move to the same city so we can hang out more often.

The kids are at the river with my parents this week, having a good time playing at the little beach, picking blueberries, and hanging around the house. It's nice to have a little break from childcare, but it will be really good to see them this weekend! I'm bringing my mom back too, so she'll spend next week with us, then Nate's parents are coming the following week (overlapping with when I'm in isolation at their house), then my mom's back again for a bit. So we'll have a busy house the next few weeks!

Ok, time for me to head back inside for my scan. Will try to post this tonight....

appointment with Dr. Boyle

Yesterday Jenny and I went to see the surgeon, Dr. Boyle, about the pathology report.  She reassured us that nothing in the report changes much the prognosis.  So now we're in the process of starving Jenny of iodine and preparing for the RAI treatment later this month.

pathology report

Jenny learned the details of her pathology report last week.  The tumor was 3cm not 2cm, protruded beyond the thyroid gland, and was either near or around a blood vessel.  None of that sounds very good to us and it's been an uneasy weekend.  We don't have an immediate opportunity to run this by a doctor for interpretation -- our next meeting with our surgeon Dr. Boyle is July 30 -- so our knowledge is pretty limited at this point.

We do know that the nuclear medicine doctors now want to give Jenny the maximum dose of radiation that her bone marrow can withstand because if some cancer survives the RAI treatment there is some probability it develops resistance to radioactive iodine.  To learn how much radiation that is, she'll be undergoing a bunch of tests in mid/late August leading into the RAI treatment.  It's possible that each test will require a trip to the Washington Hospital Center, though we're inquiring as to whether we can do some of it at the nearby Virginia Hospital Center.

Our parents are coming up big for us in August.  Becky and Mike are taking care of the kids at the river one week, Becky will be up here another week, and then Don & Ada will be here the last week of August when the RAI treatment happens.  We appreciate every day that we are so close to them.  The first week of school may be a bit of a challenge as it's not clear how much contact Jenny will be able to have at that point, and I'll be in my first week of teaching.  We'll be reaching out to our neighbors for help and I'm confident things will work out for us then.

First things first, though.  This week the kids are at camp and then we leave for vacation in San Francisco, Berkeley and Marin.  Really looking forward to seeing our old haunts, showing Rowan where she was born and (of course) catching up with all our friends and teammates in the ultimate community there.

Next steps

So surgery recovery is basically over. I'm still puttting vitmain e oil on the scar to supposedly help it heal better... that'll continue for most of the summer I think, but already the scar's not so bad. I've got full range of motion. Neck is still kind of mildly irritated around the scar. At first I thought that was from the suture strips, but they've been off so long now I'm not sure I can still blame them. Maybe I'll call the surgeon tomorrow.

Other good news is that the dosage of thyroid hormone replacement they gave me seems pretty good as far as I can tell...I feel normal. They may still adjust it based on blood work later, but I was worried there would be a lot of tinkering with the dosage just to make me feel ok, and now I'm thinking that won't be the case.

A few days ago I scheduled all the radioactive iodine (RAI) stuff. It is going to be a super pain logistically, but hopefully not that bad physically. So I'll swallow the main I-131 RAI pill August 28 and stay overnight in the hospital that night (happy birthday, Dad!). In the 10 days prior to that I'll have to take 6 other trips to the far side of DC (Washington Hospital Center) for various stuff:

• four trips for Thyrogen injections - that's the drug that'll boost my TSH (thyroid stimulating hormone) levels to make the RAI more effective without me having to go off the daily thyroid hormone replacement pills. It's kind of a recent development that you can use this stuff...prior to it people had to go off their hormones for several weeks prior to treatment and scans, which meant they basically had to become super lethargic and grumpy for a couple weeks every 6-12 months, depending on how frequent their follow-up scans were. It's good I don't have to do that.
• one trip to swallow low-dose I-123 pill for pre-treatment scan - this'll help them tell if cancer has spread elsewhere, like to lungs or something, could affect my dosage of scary I-131.
• one trip for the I-123 scan. 

Most of those visits should be fast, basically in and out, assuming I don't have to wait too long for them to take my blood (though last time I did have to wait a while for that). They told me to expect to be there 3-4 hours for the scan though. Boo.

Then after hospital stay when I'm still glowing I have to stay away from people and animals for a week. Probably I'll do most of this at Nate's parents' house in Richmond. That week spans the first day of school, which I will be sad to miss, so maybe I'll come back early and figure a way to be isolated here, I don't know. The half-life is pretty short, and I'll pee most of it out in the first couple of days, so really I think I'm much less dangerous after a few days, but still will be keeping my distance.

Good news is we can still take our trip to California at the end of July, and I won't miss Rowan's birthday (August 25). The low-iodine diet will start August 5 and end when I leave the hospital August 29. My mom has already filled our freezer with low-iodine soups, bread, granola, pies, etc. 

Then the last thing (as far as I know) is post-treatment scan on September 4. Then I should get like 6 months off before follow-up I-123 scan (no isolation, but still 2-3 weeks of low-iodine diet and at least 4 trips to WHC). My endocrinologist promised that the excellence of the nuclear medicine department there would make all the travel worth it. He better be right!

Recovery update

It's been four days since surgery, and the recovery is going really well. I'm up and about, and am getting more mobility in my neck every day. I even went to the kindergarten sing-along on Friday (2 days after surgery). I've not been sleeping all that well. I like to fall asleep on my stomach and I can't quite pull that off yet, but it's getting easier to find comfortable positions. I generally have pretty good energy during the day and then not so much after dinner.

Yesterday I finally finished sewing a skirt for Lucy, and today made one for Rowan (this is a project I started several months ago and never got around to). They turned out ok! I should post photos...but Rowan ran away from the camera. Oh well.

Not much else to report. My follow-up with Dr. Boyle is on Tuesday...I'm thinking I may be able to go back to work as early as Wednesday.

Home again, home again, jiggity jig

Got home today just in time to see the last point of the Sharapova match, and then all 40 minutes of Serena walloping Errani. Can't wait for Djokovic/Nadal tomorrow morning, quite jealous of Jean-Loup who's actually going to Roland Garros to watch in person.

Recovery's going as well as can be expected I think. I've been able to eat today and have had some energy, though not a lot. Not in much pain at all, but can't move my head too much either. Hoping for a good night's sleep. I never actually got assigned to a room at the hospital (they ran out of beds I guess), just spent all night in the recovery room. It wasn't so bad, but it was hard to sleep this morning with all the commotion.

It's super-common for the parathyroids (small glands that attach to the back of the thyroid) to get damaged or even removed during thyroidectomy. I was told they found all four of mine, and re-implanted two of them (I guess the other two stay put, or maybe they just didn't bother reimplanting those?). The parathyroids have something to do with calcium absorption, and almost everyone with thyroid surgery has to take calcium supplements for some time after surgery. Usually it's just temporary, and surgeon seems confident it'll only be temporary for me. With the nausea last night they didn't give me the calcium tablets though, so my fingers and toes got tingly...felt like I'd been sitting on them too long or something. All better today.

The wound is pretty ugly right now, but Rowan & Lucy haven't been too freaked out by it. Rowan was really not happy with the idea of my neck being cut open, so I was especially worried about her, but it turns out she was more upset about our holly trees being cut down than she was with my neck when she got home from school today. (We cut down the hollies out front! Bare feet, here we come!)

Back home

Jenny was discharged this morning and we got home around noon.  Next couple days will probably be pretty low key here.  Naps, French Open, books, etc.

I was able to see her wound (?) for the first time earlier today -- yesterday it was bandaged up -- and it's very noticeably right now, to the extent that she is wary of scaring people who don't know what's going on.  As it heals it'll turn into a scar and then fade over time.