the bad, the ugly, and the good

The situation

The lymph node ultrasound 2 weeks ago revealed abnormal nodules, and Dr. Wexler (the new endocrinologist) wanted me to have them biopsied before splitting open my whole neck. Today was my lymph node biopsy (procedure was a fine needle aspiration, just like the thyroid biopsy a month ago).

Bad news

Abnormal nodules in my lymph nodes were confirmed malignant, and now my neck is sore from the procedure. Last biopsy left me sore for like 10 days...I'm hoping this one won't be as long.

Gory details about my unpleasant afternoon

I didn't get into the procedure room at Washington Hospital Center until 1 hour 15 minutes after my appointment time, including like 20 minutes half-dressed in a 2x2 foot changing room, and then was left in the procedure room for another 10 or 15 minutes by myself after initial preparation (waiting for pathologist apparently). While waiting I encountered not one, but two bloody pieces of gauze on the floor, in different parts of the building (I think both dropped by the same guy). And this place was in the basement, so no cell reception, leaving me unable to coordinate help picking up kids from school/bus now that I was going to be late. Procedure itself went fine. The radiologist (the one sticking me with the needle) kept saying, 'beautiful! isn't this beautiful?' and made the tech take more ultrasound pictures (and maybe even a movie??) of my neck with needle inserted. She seemed quite pleased with her needle-inserting prowess. It didn't feel particularly beautiful to me.

Having my appointment go so late (3pm) meant not only that I was later than I expected getting out, but also that I was now in rush hour traffic trying to get out of DC, and I didn't really know where I was going. Lucy's preschool has after-care, and they've been really understanding and flexible about keeping her even though it's not something we normally do, so I wasn't worried about her. But it took a while to get in touch with Andrea to make sure she could get Rowan from the bus, so that added to the stress. AND like 30 minutes (and 1.5 miles) after I left the hospital the ultrasound tech called to say I was going to need to come back next week because they needed another sample from me(!!!). I couldn't believe it. At some point, close to 4pm, I realized I was beyond late and traffic wasn't moving and I happened to be close to Nate's work. So I called him and picked him up. This was fabulous because it meant: #1 I didn't have to drive anymore (it hurt to turn my head right, not so safe), and #2 now we could take I-66 (HOV).

Anyway, after we finally got home I talked to Dr. Wexler and he confirmed that both tumors they biopsied tested positive for thyroid cancer. The call I got from the tech was because they forgot to do the needle rinse (extra test for cancer in case looking at slides was inconclusive), but turns out the slides were conclusive, so at least I don't have to go back again Monday. I do need CT scan at some point to see if it's spread to lungs too, but it's not urgent, and I can do that at Virginia Hospital Center (MUCH more convenient). NOTE: even if it has spread to lungs, it's still thyroid cancer, not lung cancer. Prognosis would be worse if it's spread to lungs, but I'm told it's still very treatable. My neck scar is going to be wicked though--I think it'll go nearly from my left ear all the way across the front of my throat. Rowan is going to flip out.

First impression of radiology facility at WHC: Not so good.

Good news

I have an appointment to see highly-recommended surgeon Lisa Boyle next Thursday, so at least I don't have to wait so long for the next step. She recently moved into an administrative position at Georgetown Univ. Hospital (she used to be a Washington Hospital Center), so I don't know if that means it'll be hard to make it into her now-reduced surgery schedule, but I should find out next week.

Georgetown and second opinion

So obviously the cancer has been the big news recently, but we have other recent news that Nate didn't share in his last post: June 1 he starts a new job, as a professor (of economics) at Georgetown's business school. We're excited about the move. He's been continuing his research while at DoJ, and this spring he taught an evening class (on pricing) at Georgetown, so the transition shouldn't be too tough. Aside from having to switch insurance in the middle of this thyroid stuff, the timing's pretty great...he'll have a really flexible schedule this summer.

This past Friday I met with another endocrinologist, Dr. Wexler, at Washington Hospital Center. Nate came with me to the appointment. WHC was something like a 30 minute drive with no traffic, plus it took a good while to get from car into the right building, and then some time wandering around the giant building trying to find the office. So not too convenient. But anyway, I'm really glad we saw this guy...he's energetic, smart, and sees a lot of thyroid cancer patients. He didn't tell us anything surprising or particularly different, but he does want me to have the highly suspicious lymph nodes biopsied just to make sure they're malignant. If they are (and they most likely are) I'll probably have a CT scan to see if there's evidence of spread to the lungs. If the lymph nodes miraculously turn out ok I may be able to get away with a less extreme surgery. That biopsy will be next Friday. Also he sent notes to a couple of good surgeons to try to get me into their schedules. I already have an appointment with another surgeon (highly recommended by my other endocrinologist and Dr. Wexler) on May 21, which feels like a long way away, but I guess it could be worse. Once I actually meet with a surgeon it'll probably be another 2-4 weeks until surgery. Then another 6 before radiation/isolation.

We've been planning two big trips for the summer, one to Amherst, MA, and Barnard, VT in early July, and one to CA at the very end of July, and it seems like depending on the timing of things one or both of those trips might be squashed. But also possible they can both still happen...just waiting to see for now.

Thanks for all the well-wishes. We're feeling very loved. :)

Restarting the blog

Jenny and I are restarting this blog after a lengthy hiatus -- our main objective, unfortunately, is to make it easier to disseminate information about her cancer and treatment, and how the family is coping.

Two weeks ago Jenny was diagnosed with papillary thyroid cancer. Her primary care physician noticed a lump in her neck during a routine visit, referred her to get a ultrasound, then a biopsy which confirmed things. If you had to pick a cancer, papillary thyroid cancer might be it. It is relatively slow growing and, because thyroid cells (and thyroid cancer cells) are among the only cells in the body that ingest iodine, often they can be isolated and destroyed by ingesting radioactive iodine. Survival rates among women in their 20s and 30s (a main demographic that develops PTC) are very high. Treatment typically involves surgery to remove the thyroid and any surrounding lymph nodes to which the cancer has spread, followed by radioactive iodine treatment to kill remaining cells. Synthetic hormones then have to be taken forever, via pill I think, to replace the functionality of the thyroid.

None of the treatments are pleasant or easy. Jenny's surgery will be more involved than some because we have confirmed that the cancer has indeed spread to lymph nodes in her neck, including to one lymph node that is a couple inches away. Hopefully we can limit/avoid infection and the scar ends up not being too big a deal. Leading into the radioactive iodine treatment Jenny needs to go on a low-iodine diet (so the surviving thyroid cells are really hungry for that iodine), which is hard to pull off because a ton of our food has iodine in it. Then the treatment hits and Jenny becomes radioactive for a few days. Have to put some thought into how we can keep her isolated, especially from the kids, but also not just sitting looking at the walls. The synthetic hormones can be a drag but hopefully we get lucky and are able to get the doses calibrated quickly enough.

This has been scary for both of us. On my side of the family, both of my maternal grandparents died of cancer, my mom's generation (the first round of Grandpa and Grandma Hammer's improvements) has dealt with it, cancer also killed an uncle, my dad's brother-in-law... so it's personal for me. As for Jenny, there is plenty of history on her side of the family too and, well, she's the one that has it this time. One of our concerns right now is a small, persistent cough that Jenny had this winter. Has the cancer spread into her lungs? Probably we won't know until after surgery sometime but man it's hard not to stress about it.

The kids are aware that Jenny has something in her throat that shouldn't be there. Rowan was initially shocked and concerned when Jenny explained that doctors would have to cut it out, but she now seems to have internalized things for the most part. (Quick kid aside, yesterday evening I threw the frisbee with Rowan for 30 minutes at her prompting... it was bliss, the first time she has really expressed interest, and we both walked away happy. She threw with Jenny this evening, Lucy was the fetcher on the many errant throws.)

Jenny is a voracious reader and has turned her attention to learning about what we are up against... she knows far more than me about the details but I am trying to keep up to the extent possible. We have been helped in this by Paul Kaplowitz, a friend through his son Josh, and a pediatric endocrinologist, who loaned us his book on thyroid cancer and recommended a couple doctors at the Washington Hospital Center. We've also benefited from the expressed love and support of our friends and family, who have called us, left messages when we didn't pick up, sent cards, texted. Thank you, it means a lot to Jenny and to me. Our ability to get through the day-to-day remains pretty good but there definitely will be some times coming up where it will be a challenge.

The next steps for us: Jenny hopefully will have an opportunity to discuss on Monday or Tuesday the results of her lymph node mapping with her endocrinologist. On Friday, we have an appointment with another endocrinologist to get a second pair of eyes on things. My parents are coming up from Richmond to help with that appointment. On Saturday, Melissa, Chris, and baby Nicholas are visiting en route to New Jersey from Savannah -- which we're thrilled about because we don't see enough of them as it is.

Jenny and I will try to keep the blog updated as we learn more.

New job!

This may be my last post for a while, because I start a new job tomorrow! I'll be working at Matrix Group on their MatrixMaxx product. It'll be pretty different from any work I've done before, so I'm looking forward to learning a lot. Yay! I've been trying to make the most of my last few weeks with lots of kid time, hoping I'll deal with the separation ok.

New photos September-October and November-December.

Fall Photos

Added a few photos here: trip to Long Branch Nature Center with Kaplowitzes and field trip with Rowan's preschool to Burke Nursery pumpkin playground.

Catch up

Ack! A lot has happened since I posted last. Let me explain... no, there is too much. Let me sum up.

Not long after our trip down to Floyd, VA, we went to California to visit our favorite Berkeley places and Bay Area friends. Between Berkeley Bowl and Crixa Cakes part of me wants to move back (but only a small part, don't worry mom & dad). The trip culminated in a Brass Monkey reunion retreat at the Greenough estate in Inverness. It was marvelous, and good times were had by all in attendance (including the many little kids). Hopefully we can make this a semi-regular thing. I miss my monkey buddies!

Then we got back to the Old Dominion and celebrated Rowan's third birthday.

And a couple of weeks later Rowan started preschool, 3 mornings a week. Most days she says she doesn't want to go to school, but then when it's time to pick her up she doesn't want to come home either. Just like she was in daycare, so I guess I'm not surprised. Also, she's taking gymnastics classes through Arlington County once a week...not doing back handsprings yet, but she's got 'safe landing' down pat.

Perhaps the biggest news of all: my mom and grandmother have moved in with us! They've been here about 4 weeks now and things are going great. It's so nice to have the extra help and for Rowan & Lucy to have the opportunity to really get to know them. And I've started looking for jobs. Not finding a ton I want to apply for, but there are a couple that look promising. Hopefully something will work out!

Ok, that's it for now. Note that I put a list of links to our photos on the right side of the page here, so you don't have to search through old entries to find them anymore.

Warm Springs, Boston, Vermont, Floyd

The last week in June Rowan stayed with Grandma & Grandpa, Nate worked and lived the bachelor life in Arlington, and Lucy & I went to Warm Springs, VA with Sapna & Oskar (her very cute rottweiler). We had a great time. Very relaxed with plenty of time hammocking, warm springing, jigsaw puzzling, firefly watching, and rag rug making. Seriously, the fireflies were spectacular--wish we could have gotten a good photo, but our cameras were not up to the task. Other Warm Springs photos here.

That weekend Nate took the train down to Richmond and we went to my parents' river house to celebrate July 4 with the Dale clan (my parents, my aunt & her family, and my uncle Don). We had fun at the little beach playing in the sand and splashing in the river, visiting the yacht club and Poppy's boat, and playing with Carlos & Milagros.

Then in July the whole family boarded an Amtrak train and headed up to Boston, where we stayed with Larry & Katie Shack one night and then drove up to Barnard, VT, with Justin Reich for the weekend. Highlights included canoeing to the general store across the lake, hiking to the state park, Rowan & Justin playing in the water, Nate's first time sailing, learning Power Grid.

We were back home for two days before we headed down to Floyd, VA, for the annual solstice gathering (a little late this year). It was a very different experience from last year (when there were no kids). This year Nick & Johanna had 8mo Oscar, we brought Rowan & Lucy, and Alex & Anouk were there with their two kids (~3 years and 7 months). Friday night Aaron & Allison arrived to increase our adult to kid ratio. We slept in tents by the pond, but most of our time was spent in the pond (Rowan & Luke especially enjoyed jumping off the floating dock) and on the beautiful big porch at the house. Friday Johanna & Anouk successfully cared for all five kids while the rest of us went into town for tennis--and even got to nap themselves for a bit. Hooray! Friday night we went into town (again) for the weekly Floyd Jamboree--several small impromptu bluegrass gatherings along the main street.

Rowan was loving being swung by her arms until she got hurt...didn't want to move her arm the rest of the night. Ice cream helped a little, but was a temporary fix. Back at the house her arm was still hurting and when she couldn't sleep we started thinking about who would take her to the hospital. We thought it might be the same thing that happened to her arm a couple months ago in Richmond. Eventually Nick got the idea to ask our old friend google what to do and found this--a couple minutes of studying the video, and then Nick did the maneuver on Rowan, and presto! Arm fixed. She still didn't want to use it immediately, but when Dinner (the chicken puppet) wanted a hug she obliged.

It's nice to be back home for a bit, but we're looking forward to our big California trip in a couple of weeks too. Yay for summer vacations!

Photos from Boston, Vermont, and Floyd are here.