Tuesday, May 28, 2013

Apparently, I'm a complicated case...(Cholesteatoma story, continued)

"The sun is simple. A sword is simple. A storm is simple. Behind everything simple is a huge tail of complicated." 
--Terry Pratchett

As some of you will remember, after I had my brain and ear surgery in December, the plan was to have a follow-up surgery in June to rebuild the bones in my ear. I've been mostly trying not to think about it, while also looking forward to some kind of light at the end of the tunnel.

A few weeks ago I had a head CT, and last week I had a follow-up MRI because the CT was inconclusive. When I talked to the nurse, she mentioned words like "encephalocele," and I asked if this meant that they were concerned that I had brain leakage again. She said that yes, it appeared that this was what they were worried about. She could tell I was anxious...so she got me in for an MRI as soon as she could (Wednesday).

The MRI took over an hour and was not fun because I had to have contrast dye, and it took the technician four jabs to get the needle in correctly. One of the jabs was on the top of my left hand and resulted in a large bruise. Finally, he had success on the inside of my left wrist. That night I went to see Kieran in his last performance of "Hillbilly Heaven," and suddenly I began to feel really sick, like I had a terrible case of the flu.

When I came home, I went right to bed. I had stomach pains, felt extreme fatigue and achiness, and was cold all over, but especially my hands. No fever though. The next two days I stayed home in bed and gradually began feeling better. I called the surgeon's office on Thursday, but they referred me to the radiologist at the imaging clinic. He said he had NEVER had a patient report this before, and he seemed to think I might have the flu. My ear surgeon said something similar today. However, I have no doubt that the contrast dye caused this awful reaction.

Since the MRI on Wednesday, I've been doing my best not to think about the results. We had a fun weekend full of friendship, family, and celebration, and I was mostly not worrying. My biggest fear has been that I would have to go through brain surgery all over again...and this is how crazy I am...I was more worried about all the stress and drama from dealing with two surgeons and the neurosurgeon's office than I was about actually having more brain surgery! (Which would not have been fun either!!)

This morning we went to see the ear surgeon to get the results. The good news is that he doesn't think I have what a coworker calls "leaky brain" any longer. The radiologist thought that he saw two millimeters of my brain poking out (I'm sure there's a more technical term), but the surgeon didn't think so...or it if was, "that's not that much" he said! Hmm...  I guess there's a lot of "junk" in my ear (his word). He and the neurosurgeon didn't agree on the way to patch my skull--so some of that junk was probably muscle. Apparently the junk is helping--again, hard to explain how exactly. Honestly, I didn't follow a lot of what he said because he speaks in very technical terms.

But one thing was clear: he said I am one of the most complicated cases he's ever seen, after having done around 2,000 surgeries. My anatomy is different--I guess my skull floor is lower than most, and the bone is thin as well.

It appears the cholesteatoma has not grown back (this is truly good news, as it grew back really aggressively last year between my surgeries in August and December). When I shared my concern about needing brain surgery again, he said he wished that his nurse wouldn't try to read radiology reports (prompting me to wonder why he hadn't called me himself--but I didn't say this aloud). Next time I will ask to have him call me.

So I have what I hope will be my final surgery scheduled for July 12, a modified radical mastoidectomy and tympanoplasty, "An operation to eradicate disease of the middle ear cavity and mastoid process, in which the mastoid and epitympanic spaces are converted into an easily accessible common cavity by removing the posterior and superior external canal walls." 

The primary goal will be to have it be my final ear surgery, followed by secondary goals of cleaning out any leftover cholesteatoma and rebuilding my ear bones. If the cholesteatoma returns after that, he'll be able to just suck it out my ear. (Yes, that is what he said.) The risks are the same as for the other surgeries--dizziness and balance issues, facial paralysis, and hearing loss (or "dead ear," as he calls it).

Mike was excited that I'm such a complicated case. I know doctors find cases like mine to be exciting challenges, too. I'm less excited. I think in this case I'd rather be normal!

But a close friend had this to say: "I'm with Mike. We always knew you were above average and incredibly interesting! Now the surgeons know it too." That made me feel better!

Sunday, May 26, 2013

Monday Listicles: Why I blog

This week, Stasha at The Good Life is celebrating her 100th listicle! Woo-hoo!! This week's listicle is why we love listicles or "freestyle." I'm going to do a combo of both. 

I love doing Monday Listicles because:

1. I have always loved making lists...just ask my husband! I recently watched "I Don't Know How She Does It," and at the end of the movie, Sarah Jessica Parker's character resolves to stop making lists...and that thought made me panic! I guess I'm a listaholic.

2. It's been an awesome way to connect in cyberspace with other bloggers, a few with really spectacular senses of humor.

3. It makes me post every week and write about topics that might not have occurred to me otherwise. 

And furthermore, I love blogging because:

4. It's a great creative outlet for me.

5. I've never been able to stick to journaling on a consistent basis, but blogging allows me to chronicle much of what happens in my life or my family through words and photos.

6. It allows me to promote great books, theater, music, travel spots, restaurants, or people and pass on the good word.

7. It enables me to blackmail remind my husband and kids of things they've done over the years...such as convincing Kieran that he once made a love machine for a girl in his preschool class and also once dressed up as the Wicked Witch, both of which he completely denies ever having done.

8. It gives me a sense of accomplishment...I've been blogging for over 6 years now, having written 1,655 posts on this primary blog alone...that doesn't count posts on Marie's Book Garden, Confessions of an English Major, or One Year to an Organized Life (currently inactive). Given my record of starting projects and not always finishing them, it's good to have an accomplishment I can quantify!

9. I'm not much of an arguer--in fact, I really dislike arguing--but I'm passionately opinionated. Blogging allows me to express my opinions without getting in anyone's face. I have had some heated discussions--the one that stands out for me most of all is when some Orthodox Jews visited my book blog to complain about my book review of Unorthodox: The Scandalous Rejection of my Jewish Roots

10. My memory is fading! When I did my recent A to Z Blogging Challenge on my overseas travels, I had great fun poring over my travel journals from my 20s...and I was stunned to learn how much I had forgotten. When I'm old and gray, I will have something to look back on and remember.

Thanks, Stasha, for creating a great blogging community and prompting us to think more creatively! Cheers to you!!

Friday, May 24, 2013

Mother's Day weekend

As you can tell, I'm behind in my blogging. I think my April blogmania tired me out! Mother's Day weekend now seems like ages ago...but if I don't chronicle it in my blog, I swear I will forget it! That's what aging's all about.

The highlight of the weekend was a night away with my wonderful mom and sister, which, alas, went by far too quickly. We spent the night at the Marriott on the waterfront and had dinner on Friday night at Mother's Bistro.

Mom eating her chicken and dumplings (her guilty pleasure!)

Nadine with red snapper and grapefruit sauce

I had wild salmon pot pie--yum!
Of course, we were all too full to have dessert--but we had a highly entertaining, flamboyant waiter who joked with us about the scientologists congregating outside of the restaurant at the new scientology center in Portland. He prefaced his comments by asking if any of us were scientologists! :) He also is, apparently, a martini glass collector. (This came up because it was very hot in the restaurant and he told us that he's not allowed to wear short sleeves at dinner because he had a tattoo of a martini glass on his arm!)
Mothers at Mother's!
 We had a lovely walk back to the hotel along the river--it was a gorgeous night and lovely walk!

Love my city!

I felt mighty lazy when we got back to our room. We drank coconut-lemongrass sake and hung out...the views from our river view room were stunning!

As they were in the morning! Nadine stepped out on the balcony and got heart palpitations. I don't remember her being afraid of heights when we were younger!
Dragon boats practicing in the river

After we checked out, we headed to Isabel Pearl in the Pearl District for a lovely brunch, and then we poked around the Pearl for a bit.
Brunch at Isabel Pearl
Even though Mike, Mom, Nadine, and I had decided to make donations to the Fistula Foundation in lieu of Mother's Day gifts, I arrived home on Saturday to a clean house. That was the best possible Mother's Day gift!! My husband rocks anyway...because he took charge of the kids while I had THREE GIRLS' NIGHT WEEKENDS IN A ROW! Seriously, he is a complete saint.

That afternoon, we went off to the Barefoot Quilt Festival at the Jenkins Estate, which was named after a dear family friend, Clara Barefoot Sehorn. After my parents retired, Clara taught them how to quilt. She especially delighted in teaching my dad, who had never picked up a sewing needle beforehand. We had our wedding reception at Jenkins Estate, so it's always fun to go back.
With my maid of honor, Nadine, and Mike
 at our wedding reception at the Jenkins Estate (1990)
Visiting a quilt show always makes me want to take up quilting...but it's not gonna happen!

Multnomah Falls quilt

I'm always drawn to the Asian quilts--the panels on this quilt actually opened up

Another Japanese one

Love these fabrics!

This was made by a friend of my mom's for her granddaughter
Of course, the highlight was chatting with Clara! Nicholas showed her how he could do the Pledge of Allegiance in sign language:

Family with Clara

Clara showing us a ceramic bell she'd made, with a quilt
With Mom and Nadine at the Jenkins Estate
On Sunday, Mother's Day, I gave a talk at both services at church, honoring a matriarch of our community who died a few months ago. In the afternoon, Kieran had a performance of "Hillbilly Heaven," so a few of us went off to watch him.

Posing with his cousins and their puppy Ella after the show
Then we came back to our house to finish off our Mother's Day celebrations. It was a fun weekend!

Tuesday, May 21, 2013

Back to music camp!

Entrance to beautiful Camp Collins
At the end of April, I returned to Camp Collins with my mom, friend Lois, and Lois' friend Ruth for the Northwest Women's Music Celebration. I believe it was the fifth time I've attended--I went a few times BC (before children) and in 2010 and 2012 (click the link for "10 reasons I love music camp"). As usual, it was a weekend of amazing music, hilarity, excellent eating, and creativity. 

As women arrived at camp to check in,
others had an impromptu outdoor jam session
Camp kicks off with a fantastic song circle led by the members of Motherlode, the band who founded and runs the camp. It's the best song circle ever...led by crazily talented musicians and accompanied by other great musicians.

After the song circle, we had a bit of free time so Mom and I explored the camp and walked down to the Sandy River...and wondered how they keep all those kids away from the river during the summertime!

It was the best weather we've ever had for camp!!

It's always fun to hang out with my mom at camp

Sunglasses and hat at the end of April--nice!
After dinner the first night we had a teacher's concert, which is always completely entertaining and side-splitting.
Camp leaders Linda and Ellen, our river rangers
Motherlode, the "dangerous" creatures in the river
On Saturday we have many choices for classes...it's always so hard to choose just one during each session! Right after breakfast we had a fun camp choir, where we sang, among others, "Tony Chestnut," and I decided I needed to teach it to the kindergarteners (which I have done since then).
Motherlode's Kathleen Fallon leading a song
I went to a "repertoire" class led by roots/Americana/folk singer-songwriter Coty Hogue, a really fun "Great Camp Sing-off" class led by the hilarious parody goddesses Linda and Shelly (our team won!), and intermediate mandolin with my mandolin and fiddle idol Crystal Reeves. Not only has Crystal been my inspiration for the mandolin, but she also is a supremely nice person and an excellent teacher.

Linda and Shelly at the Great Camp Sing-off
Crystal and her fiddle
After the classes, you can find women all over camp practicing for the student concert after dinner on Saturday night. 
Lois practicing her harmonica (she took beginning harmonica that day)
Outdoor rehearsals everywhere
I usually perform in the concert, but this year I felt like relaxing on Saturday afternoon instead. I get nervous before performing before all those phenomenal musicians, and even though it's truly good for me to perform, and they are an amazingly supportive audience, I decided to purely enjoy the concert this year. The only piece I performed in was a multiple-class rendition of "Jambalaya," with several intermediate classes performing together.

That afternoon I took a nice long shower and poked around the camp store...and we bought a few CDs. I coveted the ukuleles (they seem so fun and easy!), but I can't buy any more instruments until I master the ones I have, right?

The student concert is always inspiring, as women who have just learned an instrument or who are not accustomed to performing get up on stage and sing or play their hearts out...alongside professional or highly experienced musicians. This year was notable because the stage held five or six stand-up basses playing at once! And one person played a keyboard line on an iPad.

It's a very supportive atmosphere overall...each act is met with thundering applause. Sometimes the less experienced or certain the performer, the more applause she gets!

One of the funny concert emcees

Lois performing with the beginning harmonicas

These two young women were camp staff--who performed a gorgeous song, Wanted,
in the concert and later they got a name and a Facebook page!
Check out the video here. They are way better than the original (by Hunter Hayes)!
There I am! (Crystal Reeves is standing at the mike)
Closeup of the mandolin player!
One of the funniest moments was Shelly's debut with the cowbell

And this pirate skit was pretty funny too!
The next day I took a "up-the-neck-chords" guitar class with Linda Waterfall, whose music I've long admired...and I won something in the raffle--this African finger piano!
When I won, Marie Eaton of Motherlode announced my name as "the other Marie"--
I love going places where I'm not the only Marie!
Then it was time for closing circle.

And time to say goodbye!

Camp buddies
Another successful year at music camp. Think I'll practice my mandolin or guitar more in the next year? I learned some great new tricks--don't want to lose them!