Fifteen

New flowers! There are twelve beautiful red roses in a vase on the kitchen table... It's our fifteenth anniversary today. Thank you to my husband for love and support, strength and tolerance, three happy kids and some laughs now and then. Fifteen years went by so quickly!

The weather this week has been beautiful. I won't be wasting the rest of today inside, but I'll be filling in the blanks of the past two weeks.

The girls went to Camp Togowoods, a Girl Scout camp about six miles down the road from our house. The weather wasn't so great for the six days they were camping, but they still had fun hiking, kayaking, canoeing, making crafts, singing songs and all of the typical camp stuff. I know I complain about their noise and mess and attitudes sometimes, but having them gone for so long was just unnatural. Misterguy learned how to be the center of the universe.

It turns out that this entire month, T has had pneumonia, though she's seemed fine, except for the cough. BossLady picked up strep at camp. I think by next week we could possibly all be healthy at the same time.

The garden is doing pretty well, though we're obviously not old pros at gardening. My dream of having a lawn for the kids to play on has crumbled to little bits of hope that one might be planted in the fall... and the planned addition/garage has been put on the 2010 burner. I told someone a few days ago that living in Wasilla is a lot like living in Nome, with dirt roads and odd people - but with a WalMart within driving distance. So, growing up in Nome at least gave me a pretty high tolerance for zero curb appeal.

With the girls back in full force and BORED, we put together a new chore chart with math and reading boxes to check. We also have about a dozen Girl Scout badges for T & K to earn this summer, including some Susitna Council badges specific to Alaska's native cultures. We're trying to keep up with the library's summer reading program. Soccer happens for us 3 or 4 nights a week, so that's our most consistent thing going on.

We're excited about flying down to Bemidji this month! The girls love it there and LittleDude is soooooo ready to hang out with his BOY cousins... In August we'll get to make up for the pneumonia-cancelled trip to Nome, so we're hoping for lots of berries.

Time to head back to the clinic for more antibiotics! And I'll be picking up ingredients for my latest obsession, fresh spring rolls.

inpatient

I have some beautiful flowers by the kitchen window, a sunflower with some pink carnations and some tall purple flowers... Darren and Nancy sent them to brighten up my hospital room this week. I had pneumonia and a lupus-related bleeding-lung problem.

T got sick early this month with what seemed like just a productive cough. MissK caught it two days later, LittleDude was next, then it was my turn on June 11th. K had been flying out of the east coast for two weeks, and when he came home on the 12th I started living on the couch with a tissue box, coughing up my lungs. I pulled it together long enough on Monday to drive BossLady to her soccer practice, but Tuesday morning after the girls' camp physicals I had to see the doctor at the Valley Clinic because I was just too sick to put it off any longer. She had a chest xray taken, sent me home with antibiotics and said it didn't look like pneumonia.

The next morning at 8:45, the pulmonology nurse at ANMC called to say I needed to be admitted. I was actually kind of relieved - my body was screaming at me with pain in my right chest and I was walking hunched over to make it easier to breathe. What I didn't know at that point was that the radiologist who read the xray from the day before had stated that my lungs had multiple round lesions that looked like metastases (cancer spread from elsewhere...). So by the time K and the crew and sick little me arrived at the hospital, the staff was ready to scramble to get me admitted and tested and medicated. I had a CT, a bronchoscopy, and probably a quart of blood drawn. Then I settled into my room to watch tv, have visitors, order room service and watch the i.v. drip. The quiet was nice, REALLY nice, but I missed the family and everything. I couldn't sleep, either. I got so bored that I walked to the nurses' station and had them print my xray and CT reports. So that's when I figured out what was up, but I knew it couldn't be cancer.

I got out yesterday. The doctor believes that the strange lesions the radiologist saw were actually blood in my lungs, a rare lupus complication. I googled it (diffuse pulmonary hemorrhage) and it sounds right. About all I want to do is look at the films, because that's what I'm used to... not vague explanations and dumbed-down terminology. I'll go back on Wednesday for a follow-up xray and more lab tests. Now I just have to get back into the routine, if I can stop having 3-hour naps.

gather no moss

Much ado...
It's been a very busy month here. We went to the Native Heritage Center for Mother's Day; MissK and her class released some salmon fry into a lake; we got to visit with our really good friend Donny and his sweet daughter; MissK sang in the 1st Grade Concert; T had a track meet (500 athletes!); then she had a bowling field trip and finally school ended.

While the kids celebrated the last few days of school, I flew up to Nome and celebrated the graduation of the daughter of my childhood friend... Thanks, Crystal- in a REALLY BIG way- and congratulations to Taylor! She's a beautiful, smart girl with great parents and a world of possibilities open to her. I also got to watch Linda's son graduate from kindergarten, awww.

It's hard to describe going back home after years of being away. I loved every minute of it... Willy and Bridie and the boys let me stay at their house, and I even got to visit with my mom and grandma who were passing through on their way to Indiana. Good times, but with a weird detachment from my three baby birds. K had a few days off of work and stayed here with them... they survived, so did I. It was peaceful.

Part of my excitement about being in Nome had to do with King Island in the late 1800's and early 1900's. That's where my dad's great-grandparents are from, we think... So I got to visit the King Island Native Corporation's archives and search for Anayak and Iutok and any other possible relatives. It was really interesting and I can't wait to go back again.

I came back after three days and celebrated our DownTheRoadFriends' son's first birthday. It was a beautiful weekend and we got all the leftover frosting. The next day, R fell on his face in the front yard and made a great bloody gash above his left eyebrow. Long story, two hospitals and six hours later we were home.

Now I'm just winding down from five straight days of ballet. Ballet, ballet, ballet. I was StageMom (DUNH-DUNH-dunh!) again, because I love how intense everybody gets and the whole process of putting a show together. I love how city-fied and pretentious some people are. I love the kids because they're brave to step out on that stage... and I love the music. Tomorrow I get to sit in the audience. I'm taking Mom. Yay!

a goodbye

What keeps me away from the blog? Aside from mom-duties, mostly Craigslist, Facebook, genealogy, sudoku or knitting. I can't get into myspace or twitter... even less would get done around here. I'm not devoting enough time to gardening either, as droopy lettuce starts tell no lies. The tomatoes are doing okay, but I've mixed them up now and can't remember which are cherry and which are whatever else I started. K got down to business last week and put the garden back together.

This week is the last week of school. I've been helping out the two librarians as much as I can. The kids are lovin' it since it's devolved into one long string of field trips and class parties. On Friday, each of their schools will have a picnic, and T's supposed to bring batches of cookies, extra clothes and a towel because they're going to have "water games" for the students all day. I've been planning a short trip to Nome to watch my friend Crystal's daughter graduate from high school... but that may not happen at this point - it depends on travel arrangements and weather - so we'll at least have the trip up there in June to look forward to.

Twelve days ago, our almost-6-year-old chocolate lab Chena died. He'd been put out on his dog run in the morning while K was flying and the kids and I were all at school. Sometime during the morning, he pulled himself out of his collar, ran away and was hit by a car. I don't know the details other than that the dog catcher was called, he picked up Chena and brought him to the shelter, where Chena was put to sleep. The kids took it pretty hard. Kevin brought Chena home and we buried him on Saturday the 9th. R cried because his sisters were crying, and he understood partly what was going on, but death is a big confusing concept when you're three... MissBoss grieved in her own way and then moved on. Chena was mainly a birthday present for T when she turned three, in Laramie. So his death affected her the most. I used to bitch and moan about his doggy-ness, the smells, the accidents... but she handed me a lesson in acceptance one day when she said so simply in his defense, "Mom, he can't help it." She loved her dog. I don't know how K's been affected, but for me, Chena being gone means that I don't have my late-night kitchen company, who'd lick himself for ten minutes and then fall asleep, whimpering and wagging his tail until he woke up to put up with me clicking and typing the hours away. It means that I know I should have been a better person for Chena, that's for sure.
We've got our good memories and funny stories...

forget waterboarding

I think we as a nation really didn't need Guantanamo all along. To squeeze anybody for a confession, deal, or national secret, all that's required are two kids in a minivan using the stream-of-consciousness-sing-song-pointless-jabber skill like a drill to the back of the head, and a third child splicing in "MAMA MAKE THEM STAAHHHHHHHP!!" every minute or so in a very high-pitched whine, the sun blinding everyone in the car and the radio blaring in a sorry attempt at blocking it all out. Simple.

We went in to Anchorage not long ago to watch K play in a hockey tournament, and that's when I came up with the idea of minivans as torture chambers. K's team lost badly - but there was a team from Nome playing, so it was worth it to go and see some familiar faces and catch up with friends.

It's been hot this week! We've put away the winter gear and caught spring fever. The kids only have three weeks of school left... I finished R's baby blanket, in a feat of perseverance. I also finished reading Little Dorrit by Dickens, after obsessing over PBS' adaptation of it. The book is overwhelming with its 1800's British phrasing, but it was mysterious and funny and I loved it. SO, now I can move on and hopefully get into a more productive mood.

This weekend we braved another road trip to check out the Aviation Trade Show, met up with Peg & family, then drove to Sutton to listen to a talk by the author Gary Paulsen. T's been doing a book report/project on his book "Hatchet", so she was excited to meet him and get his autograph.

Busy days...

mud and seeds

We just got back from a 4-mile walk on the bike trail along KGB Road. Little Dude was King Dude since he got to ride in the stroller almost the whole way while the girls rode their bikes and we grown-ups hoofed it. Boss only crashed twice and I only needed the inhaler once.

Spring right now means that the snow and ice have melted into giant road-ponds and mud-ruts along the sides of the road, there is trash everywhere you look, and the kids change out of muddy clothes at least twice a day. It also means the dog's back outside, and the grill's not just a dormant piece of backyard clutter anymore. We've started some seedlings for this year's garden: tomatoes, spinach, romaine, beans, sugar snap peas, cilantro, green onions, and cherry tomatoes, so far. I think this year we'll try growing potatoes... and hopefully I can get my hands on some rhubarb to transplant.

In the works are: the ballet recital at the end of May at the PAC in Anchorage, a trip to Nome for Taylor Booth's graduation, Girl Scout Encampment at the fairgrounds in Palmer, Girl Scout 6-day camp at Togowoods near Big Lake, and ever more soccer. I'm also hoping to make it to my 20-year class reunion in Nome during the Midnight Sun madness. Obla-di, obla-da.

3 Years, Life in the BDP

Tonight I was clicking through the PH emails I get, reading other people's stories about their treatments, meds and so on, and I realized that it was three years ago this week that I was tumbling down into the Big Disease Pit. I'd been diagnosed a few weeks earlier with another lupus flare and pulmonary hypertension, I was on prednisone, K was working in California... and I started coughing up blood. I had to haul the kids to the ER with me, send them away with friends, then I was admitted for pneumonia. Rough. I think the best memory I have of those days is when all my girlfriends came to visit and make me laugh... thanks again my friends, it still means a lot that you were there.

My doc has taken me off of Revatio, my only "real" PH medication. She said it tends to lose effectiveness in patients after about a year or so. It's made me a little nervous, because Revatio has been my security blanket and I worry that my pressure will go back up. I mean, it's nice having fewer pills to take but I don't want to take any chances... She believes Cellcept will handle the disease process all by itself but I won't be convinced until I have another echo. I'd actually rather have a right heart cath, since most PH patients have one yearly, and it's been over two years since my first one. My docs are consulting with the PH specialist in Seattle who oversees the ANMC cases of PH, but I wish wish wish I could just fly down there and talk to him in person.

Yes, worrying about anything will make any kind of pressure anywhere go up. For now I'll just not think about it so much, and celebrate another year above ground!

44!

Happy Birthday to a loving, hard-working man, the World's Greatest Dad, Kevin.
XOXO,
Your wife and cage full of monkeys

ash plumes, ice rinks

I just now acted on a strange impulse to give myself a haircut. I hacked off the dangling wavy front-ends of the A-line bob I had. The look just wasn't working for me anymore. Not that I know what my "look" is. Maybe... AFA:Almost Forty Apathy... or GTWAM: Give This Woman A Mirror.

I went to a baby shower yesterday, and even with my weird hair, bored kids (no husband, no sitter) and early departure (Girl Scout Skating Day) - I had fun seeing old friends again. Martha, Julie, Nicole and some other friends were there. R wanted to see the baby, because he thought it had been born already. I showed him Kyla's belly and he was pret-ty impressed. T was silent and still, wistfully looking around at a house way bigger and nicer than her own. As we were leaving she talked it through, reminding herself that in the years to come we'll have more space and little luxuries. BossLady was bored, then hungry, then set on asking every 5 minutes if we were going yet.


We skated for an hour with about 200 Girl Scouts and had fun. Though I won't likely go back if I have to prop up a kicking/dangling 35-pound boy while I'm leaning forward and trying to stay vertical, surrounded by flailing children and other AFAs and GTWAMs.

The volcano, Mount Redoubt, has been erupting for the past seven days. The first warnings were issued months ago, so I think most of Alaska was ready for it. Flights are all tangled up, ash fell all over Anchorage and a few other places, but our area hasn't been affected much. K got to see a huge ash plume after an eruption yesterday afternoon. He was in Soldotna, east of Redoubt across Cook Inlet, for a hockey tournament. Keepin' the dream alive...

Tuesday

On Tuesday, my nephew and his big fan club in Minnesota found out that he had GREAT results from his bone marrow biopsy done on Sunday. All of the chemo and the miserable side effects have done the job... we are so happy for Abe!

Also on Tuesday, the grandma of one of my best friends died. Ruth, as I remember her, was small and thin and elderly but everything about the way she carried herself showed how tough and confident, wise and caring she was. She had a face made for smiling. Even though she had a very long life I think everyone who knows her feels what a heavy loss it is now that she's gone. Goodbye Ruth, I won't ever forget your smiling, knowing face.

Spring Break aka Winter Craziness

I'm up late, it's been a long day but there was one last load to dry. It's been a long week, actually.

I think I forgot to mention how my appointment went last month. The biggest issue was reducing the number of meds I'm on, and since my pulmonologist says my PH is autoimmune-related, she's taking me off of Revatio (vi-vuhhhh, viagra) and sticking with Cellcept. The rheumatologist also decided to discontinue Fosamax and not do Reclast at all, since I'm not at very high risk for an osteoporotic fracture (yet). I have low bone density in my spine, but not my hips. So I got a reminder to keep up with calcium and a scolding for flaking out on Advair.

Two weeks later I had a follow-up 6-minute walk after reducing the Revatio dose, and I did better than I've done, ever, on a 6MWT. I walked over 2000 feet, and I stayed at 100 on my O2 sat. I have to repeat the walk next week I think. It means I get to joke around with Ray, the Respiratory Therapist. Or talk politics and religion.

We've been busy! The school had some fun events (movie night, Dr. Seuss' Birthday, Pastries for Parents) during the week before Spring Break. On Saturday, we visited Nanny in Anchorage for her 84th birthday, and we also stomped around 4th Avenue to watch some of the Iditarod's ceremonial start.

On Sunday, we drove out to Nancy Lakes Recreation Area and snowmachined in to Red Shirt Lake to camp in a public-use cabin that K rented for two nights. I think it was supposed to be an idyllic, peaceful wilderness experience, but the offspring saw it as an opportunity to sound their barbaric yawps over the roofs of the world.

The day after the Red Shirt trip was done, T had a soccer scrimmage... On Thursday, K and the girls headed back to Nancy Lakes for an overnight snow-shelter-building adventure. The spot they chose wasn't fit for an actual snow cave, but they dug a big hole, and used a lovely blue tarp for a roof!

Today I let the kids loose at Rascals, an indoor jumping-playground. That was a very long hour and a half but it was well worth it. The best part of it wasn't jumping at all but riding in circles on the Plasmacars. AND FINALLY, we met up with Brenna and her boys (yay! cousins!) at the Wasilla Pool for a couple of hours of splashing around. R only lasted until his lips got blue, but the girls and their cousins were the last ones out of the pool.

Now, I think I need to sleep for a couple of days.

el nino

So what about the other kid?
He is charming. I've heard several people say that they would steal him from me if they could. Maybe it's the short, dark and handsome thing, maybe they like his dimples and his squinty grin.
He still says some things in his own funny way, like "I already HAD gwefdist!!", or "I aftergot my BOOK MAMA!!". He can't make the "rrrr" sound. He does okay with letters and numbers, but it takes a lot of prodding to get him to sing the ABC song. His particular gifts seem to be: jabbering constantly in a very high-pitched voice, gesticulating, and being either absolutely infuriating or ridiculously entertaining. And yes, his sisters call him "Eyeball".

middle child

Mini-me's conference was yesterday. First grade is a breeze for her, but I could tell from what the teacher was saying that it's not boring. She's able to challenge herself, she's great at math, but LittleK's favorite thing to do is write - stories, letters, illustrated journal entries - and she's pretty good at spelling too, for being only six. Mini-me. Karma.

first-born

T does have a mild case of scoliosis. It's about a 7-degree curvature, nothing worth worrying about. Her pain has lessened and she's not missing school, soccer or ballet anymore.

We went to her "Student-Led Parent-Teacher Conference" today. I'll just take off my Bragging Hat and state the facts... she's advanced, in every subject. She's conscientious, hard-working, she gets along with everybody and she doesn't have a shred of arrogance. Wow. She makes mistakes like every student does, but I'm happy to see that because it means that it's not all one big cake-walk.

an ache, a water park, potty humor

FEBRUARY, what??? It seems like winter was humming right along, there was snow, the kids were always outside... then January happened and we all just fell flat on our faces. Oh maybe not K, he's always on schedule and working out... but the rest of us are kind of out of it.

T has an aching-back problem. All she wants to do is sit with a heating pad pressed against her back. K took her to the doctor today, and there's a possibility she has scoliosis. We'll know more tomorrow. She never had this problem before last week, and it's hard to watch her be so bummed out and inactive. She's missed another day and a half of school and now has a tangle of missed assignments to make up.

The girls and I went to H2Oasis in Anchorage on Saturday for an absurdly-delayed birthday event (they have September birthdays). They each invited a good friend and we all had a blast. T's back was either not as bad as usual or she was just ignoring it. My nephew was celebrating his tenth birthday at H2Oasis that day, so we got to see lots of relatives. I got up the nerve to go on the Master Blaster slide (with Boss' little six-year-old friend) and also got talked into going on the other huge slide... kids are brave. I think it was brave enough of me to be seen in public wearing a swimsuit. Yikes.

R and his dad met up with some Lynden friends that day and went ice-fishing. I don't know where they went, other than it was somewhere in the Matsu area and they had a 40-minute snowmachine ride to the lake. Little Dude didn't catch any fish, but he did poop on the ice. What an adventure, potty training! Being 3, he's sort of preoccupied with that particular bodily function and he thinks it's perfectly appropriate to talk about butts during dinner. He's learned his numbers pretty well and yelled from the bathroom the other day, "MAMA!!! LOOK AT MY SEVEN!!!!"

cooped up and up late

Since I last wrote, a heat wave passed through and turned our driveway/front yard into an ice rink, like it was when we moved in last March.

We've had more mamavan adventures... During the deep-freeze week of 20's below, I got stuck three times - twice driving off the sides of driveways, and once backing into a snowbank. After the big thaw, there was a backwards slide-to-the-trees/forward slip-to-the-ditch maneuver after I attempted to park in the driveway. I waver between humble gratitude for the man who keeps saving me and eye-rolling annoyance that preventive steps weren't taken. No wonder so many Wasilla people drive monster trucks.

Thank goodness we're now back to normal January temperatures. The car smells better when it's below freezing.

Now we're coming to the end of a week of sick children. It was the return of the Barfovirus. R was first, then I think two days went by uneventfully before BossLady and T were heaving. They both missed school the past two days. So that brings their grand total of days attended in January to NINE - thanks to 3 holiday-days, 2 weather-cancellation days, 1 inservice day, and 2 barfing days. K's still not on a daily flying schedule, so we all feel like we've been stumbling over each other and the dog for two long months.

Speaking of the dog, he hasn't run away since his 20-below overnight expedition. The woman who brought him to her house that night said he had icicles on his coat and was almost run over a few times. We now know how fast Craigslist ads work - and we also don't take his collar off anymore!

I had my echo done, the pressure has gone down into the 40's. (happy dance!)
I won't officially get the results from my doctor until February 18th, though, because the black-ice, school-cancellation day was also the day I was supposed to drive into Anchorage to talk to her. I also had another bone density scan done, but those techs don't give hints about results... Overall I seem to be doing MUCH better and I'm thankful for it.

a trim and a skate

Today was a "Professional Development" day for the teachers in this district, the first of two long weekends this month for the kids. So we had a lazy morning, then talked Little Dude into getting a haircut at Auntie Brenna's... toned down the Animal look.

We also went ice-skating with Brenna, Wyatt and Wilson on a pond down the street from their house. R got used to hockey skates after about 10 minutes and a few tears, BossLady can glide without doing the ChopChopWobbleFall, and Wyatt really liked being pulled in the sled. It was a good day.


Quyaana to Brenna, you're so good to us!

homesick!

It's so peaceful here right now. I think I stay up ridiculously late just because it's peaceful after 9:30pm and I'm a hoarder of quiet, solitary moments.

K's on a schedule this month that's been taking him to Nome & Kotzebue from about 7pm to 3am. I'm kind of jealous... I haven't been up there in almost four years, and I miss that feeling of a place that's a part of me. The kind of place with streets and houses and shortcuts and skylines you've memorized, people who remember you and everything you ever did there, places where your kids played, all that. I'm sure K doesn't feel the pull of Nome in the same way, but it's got to be fun flying that old familiar approach and seeing the city lights, Anvil Mountain, the old softball fields...

T is bound and determined to move back to Laramie at the first opportunity. She told me she wants to buy our old house back, go to college at UW, and get some horses. I guess she feels the same way about Laramie as I feel about Nome.

Tomorrow, I'll have another echocardiogram done. In October the pulmonary arterial pressure was 54, which is almost unchanged from the October 2007 result. Next week I go in for a bone density scan to see how decrepit my bones are, then I'll get to talk to the doctors the same day. I'm hoping for some new strategy on getting that pressure down, and also a prescription for Reclast instead of Fosamax. Chemical Mama.

out with the old...

In with the new! I made a few changes... the "Heard at my house" column was too long so I archived it in the previous post. The old slideshow can be found on this page . I considered changing the entire look of this blog but really, I'm too lazy for that. I need the time to finish that neverending baby blanket.

2008 Heard at my house

"Daddy, why are toots funny?"

"Don't bite the table. DON'T!!"

"That's not a ball, that's a potato."

"What if every car on earth was a hybrid?"

"What if candy was just as healthy for us as vegetables?"

"I wish we had xray vision."

"So, when can we buy a horse?"

(grinning)"Me, eat, boogeh, Mama"

(R, in the car) "UG BUG!! UG BUG!!"

(sister to brother) "EYEBALL! STOP BITING THE COUCH!"

"HEY! Get your head out of the dryer!"