Tuesday, March 29, 2016

It's easier

I've been meaning to have a conversation with my dad about my mom's mental capacity for a long time. 

My brother's told me things. I pick up on what's going on with my mom when we talk on the phone. 

But I need to talk with my dad. 

Mom is retired and always home, so calling the house and having the conversation that way is next to impossible. Especially because they use the speaker phone all the time. 

He has a cellphone, but he works with table saws and other loud machines. For forty years, he's built cabinets that are installed in private jets. 

So calling him at work is difficult. And it's not the type of conversation I'd want to have if I was at work. 

So the easier thing to do is get on a plane, travel to Tucson, and see for myself what's going on. 

I happened to get lucky, and Stacie is going with me. She's a bad ass. She's a CDC trained epidemiologist who holds a Master's in Public Health. She also has personal experience with a family member who is in the later stages of dementia. 

So having her on this trip with me is invaluable. Not only because of my mom and what I've created in my head that is going on with her, but because I'll need the emotional support. 

And Stace has a wicked sense of humor. 


We're sitting at the airport, just me and Stacie, my First Port Angeles Friend. I'm so thankful she is here. 

But we're surrounded by about a million other travelers. Because it's Seatac International. 

Getting through security was a lot of waiting. The last time I flew, I was pregnant with Nathan, and traveled to DC for a national conference. I got to tell one of my college girlfriends, Melanie, in person, that I was pregnant. 

So it's been 10 years since I've been on a plane. I'm feeling very overwhelmed. When you haven't traveled in so long, you get outta practice. So I'm a little rusty. 

Right now, at the airport, there's this boy who looks to be about 4 and he's pushing his hard Star Wars suitcase around. He's on our flight. Knock yourself out kid. Keep burning calories. Bc I don't want to deal with you running up and down the aisle of the plane. 

In a few hours, we'll be in Tucson, and it won't be terribly hot. 

Saturday, March 26, 2016

They don't know

They don't know I'm leaving on Monday evening and will not be home until late Saturday evening.

This is the longest time I've ever been gone. It's also the furthest I've ever been from them.

I have anxiety about it. Not that anything catastrophic is going to happen when I'm gone. I know they're with their other parent, and I know Randy loves them.

But I'm still anxious.

And excited.

And nervous.

And thankful that my First Friend on the Peninsula, Stacie, is going with me. I'm thankful her husband Ben, and the twins, are supportive.

I got Stace before the boys were born.

Before her twins were born.

But that's a blog for another time.

Because I just finished reading part of The BFG to them.

And Randy's tucking them in.

Routine stuff.

I'll tell them tomorrow.

Because I know that if I tell them too far in advance, Nathan will perseverate on it, and his anxiety goes through the roof, creating stress for all of us. Isaac is a questioner, and will ask a million questions, and we'll get to have a conversation, but it's ok to wait till the day before to tell them.

They have no concept of what it means to get on an airplane and fly in the sky.

They have no idea what hot is.

They don't know what Eegee's is. 

They're totally gonna miss out.


Hundreds of Electrical Storms

Last week was incredibly long. Good, but long.

Tuesday and Wednesday Nathan had more seizures than he's had in a long time. The last time I remember this many was back in December, the day after we saw Star Wars: The Force Awakens. 

The full moon started on Tuesday March 22, and ended on Wednesday, and there was a lunar eclipse on top of all of this. 

I used to not believe. 

I used to not be willing to admit. 

But now I see it. 

I feel it. 

I know the moon affects his seizures. 

It sounds crazy. Like "here's a crystal go tape it to your forehead and sit in a vortex in Sedona" crazy. I'm not knocking Sedona. It's a beautiful place. I used to live just north of there, and remember hiking and camping in and around Sedona. I have been up & down 89A numerous times in my life.

I'm just saying.

It sounds a little crazy.

But it's not. 

I'm not. 

We know the moon affects the tides. The ocean. And how big is the Pacific? It's the biggest freaking ocean on our planet.

And, we live on a peninsula. But not just any peninsula. We live on the North Olympic Peninsula. West of Seattle. South of Victoria, British Columbia, Canada. 

And up here, surrounded on three sides by water, where we happen to have 4 seasons...we know when the solstices are, and we know when the equinoxes are, and we know the difference between the two of them. 

And we know that Port Angeles has a certain type of smell when the tide is out.

And there are certain times when you can hike along the beaches, and there are certain times you should never.

Because the moon affects the tides.

And while there isn't much vetted research on how the moon affects our body, we are made of 60% water. 

So, it makes sense, to me anyway, that the moon affects us.

And I know it affects his seizures because on Tuesday and Wednesday, Nathan seized like a motherfucker. Oh. Wait. OK, so that basically means hundreds of seizures both days.


Hundreds of electrical storms.

And no matter what type of medication I gave him, I couldn't get the seizures to stop. He may have been in status epilepticus. But, his seizures are so short, and he kept on going like he always does...and he managed to get through the day.

On Thursday, after Randy and Isaac left for school, he said to me, "Mom, I'm tired and need to go back to bed."

Um...ok...good that you recognize that...great that you're listening to your body!

And he went into his room and he closed the blinds and he turned on the white noise machine and laid down for nearly 3 hours.

I didn't stare that gift horse in the mouth--I took a nap, too!

dish towels

I have the ones from our wedding, the dark green and the gingham white and dark green. They're nearly 17 years old and came from Target.

And I have one from Christine that is an oversize, waffle-weave, rich dark chocolate brown. She wrapped it around a dark brown mug. She is incredibly giving.

I have those ones that I thought I needed when I was at that one goddamned big box store on the highway. They're small and white and square. They're really bar rags and they're pretty good for cleaning up spills. Not that they're great. What it takes to pick up spills is time. Usually on your hands and knees. And patience.

There's one from my grandmother. It's white and embroidered with a big yellow flower. I cherish it. I've had it a long time. Probably longer than the ones we got when we were married.

I have the new ones from Costco, which is also a big box store, but not a goddamned big box store on the highway...because Costco takes care of it's employees. There were several in the package: solids of cream, lime green, and burgundy. There are a couple that are printed with peppers and say "Spicy." A little homage to my southwestern upbringing. And because I'm a little spicy.....

There's the white waffle-weave ones...with the green lines on one of the shorter ends...and the knot thingy in the middle of the green lines, but only on one end. Those are from Ireland. My mother gave them to me. My mother and my dad and my brother traveled all the way to Ireland...this was a long time ago...like, Sam was still in high school....and she brought me dish towels.

I appreciate being thought of while they were in Ireland.

But...dish towels?

Yes...dish towels.

A person I used to know, her mother and father traveled to Ireland and her mother brought her a couple of bracelets. She and her mother are pretty close.

I was always a little bit jealous.....

Of their closeness and the bracelets.

Her mother knows her well.

My mother doesn't know me very well.

And it's circumstances.

We live nearly 1,700 miles apart. I have a special needs child and we've made medical decisions surrounding his care that are different than what most people would do. If we were to take him out of the state of Washington, we could be thrown in a federal prison for giving him a Schedule I substance, drug trafficking, and child abuse. I'm sure they'd throw some other charges in there. And I'm not sure my brother the Public Defender would be able to get us off those charges.

So I'll go alone, to visit my parents...and I'm not bringing them dish towels.

Even though it'd be kinda funny.....

Friday, March 25, 2016


The last time I was in Arizona, it was 2003. For my younger brother Sam's high school graduation.

He's a grown up now and lives in Phoenix with his girlfriend. Everyday he's going up against Maricopa County Sheriff Joe Arpaio, who's known as "America's Toughest Sheriff." Sam is a Public Defender. 

I told him he's never allowed to defend someone who assaulted, abused, or murders a disabled person. Especially if the victim is autistic. Or has epilepsy. 

He said he'd excuse himself. I guess public defenders can do that. He's a good kid brother. 

We're 12 years apart and he was my favorite form of birth control. Because when I was 14, getting into hair and makeup and being a teenage girl, he was 2 and into everything.....you know, how they do. And when I was 16, he was 4, and there ain't no way I'm dealing with that shit. Baby. Not happening.

The last time I saw Sam was in July 2015, he came up, met the boys, and went to chemo with me. It was the first time in our lives that we were on the same playing field because we were both adults. It was fun to be a grown up with my kid brother.

The boys called him Uncle Sam, or Uncle Sammy. He loved it. But I think Nathan and Isaac are his favorite form of birth control.

And next Friday evening, I'll be having dinner with him and his girlfriend, and our parents in Tucson. I'm really looking forward to seeing him next week.

Monday, March 21, 2016

One Year Ago

A year ago yesterday, March 20th, I had my lumpectomy. 

It was a Friday. But this year it's a Sunday because this year is a leap year.

It was also my parent's 34th wedding anniversary.

And the first day of spring--which is a big deal when you live in Western Washington. 

But last year, Stacie came over before 7 am--she was up first for Boy Duty. This woman is always first up. Usually. Mostly..... Randy and I had to be at the hospital by 7:15. I think. I was a little late. But it's not like they can start that party without me.

We made the decision to keep Isaac home from school that day, partly because we wanted one less stress, one less place to have to be. Because getting me to the hospital was stressful enough. It's ok to miss a day when your mom is a breast cancer patient and she's having surgery to remove a tumor. Nathan, at this point, had been homeschooled for about 5 weeks. Because, life is what it is.... And, had something happened, I wanted my kids to be together. Because with cancer, there's only so much that you can control. So I took control of what I could.

This was the third time Randy had driven me to the hospital, in my 4Runner, with this feeling of, we'll be home...we don't know when, but we'll be home....and we'll be relieved...and something will be different...but it won't...and we just gotta go do this...... The first time was when I was laboring with Nathan; the second was when I was laboring with Isaac.

Funny, all three trips were to remove something growing inside my body, and they just all had to come out! YES!

At the hospital, Stef was my nurse. She's a frickin rock star. She took care of me. She's also a friend--small town--and the reason my kids now eat chicken pot pie. Thank you Stef. And thank you for holding my hand while the nuclear med tech, who happened to be a former student of Randy's--small town--injected my breast in several different areas around my aureole (that's the part that surrounds the nipple, just so ya know) with this blue shit that's also called "contrast" and basically that means you're gonna glow. And your pee turns turquoise. And that shit burned like a MOTHERFUCKER. A LOT. Like liquid fucking fire being injected into your breast--several times--around the circumference of my aureole and the surgeon--who you totally trust--is going to cut you the fuck open. Not just cut you open....but....cut you the fuck open, on your B-R-E-A-S-T.

But I digress....they injected the contrast so that she could see my lymph nodes more easily because with cancer patients you gotta know if the lymphatic system is affected because if it is, then, basically, your entire body is infected with cancer.

So then at some point, Christine showed up for Boy Duty. And she totally kicked ass! She's an early childhood educator and she gets my kids like nobody else. Because she's Christine. And at some point they did this delicious crazy goodness of an obstacle course with Jedi's and colored masking tape and...well....here's what it looked like. She texted me pics. Because she's awesome and she loves me and I love her. And she knew it would help.....and it did!!!!!

And we waited....and we waited....and my surgeon came in and checked on me--which, you know--you don't want someone to have someone else knock you out, and then cut you open on any part of your body, let alone your breast. Right? So, on March 20th, she'd done several surgeries before mine...and she wants the contrast to sit in for a long time because up in Alaska when she used to do this, she'd sometimes check women in the night before because the longer the contrast can sit, the better.

And I waited some more. And I hadn't eaten anything since the night before, and I had taken two showers at home--one the night before and one the morning of--and they give you this bag full of stuff when you leave your surgeon's office for your pre-op--like it's the fucking spa that you're going off to or something. They put in this nasty smelling pre-surgery soap called Hibiclens--and you scrub everything down so that you're clean. Because you don't wanna bet getting the MRSA from the hospital. Oh no.

And I'm not hungry. I'm not freaked out. I'm just sitting there...Randy's waiting for me to go back so that he and Larry can go to Sergio's for lunch (bastards!). But you know, people are having surgery and they're running late...and Stacie brought the Nuggets by to see me. And Amy stopped by. And Kelly visited with me for a long time. And Stef was in and out and being a bad ass.

And I'm reading my book and I'm on and off facebook and I'm telling people to check their breasts--did you check yours yet? For reals. Do it. Men, too. Don't be shy.

And the boys are having a blast and they're eating and they're together and they're being well taken care of by families who love us and whom we love....

And then Jeff shows up with Dean and Reid, and shit got real. Because all four boys all became Jedi's and they were tromping through the forest that is our back yard and they were on Endor looking for troopers. Of course.

And at some point Bonnie came over and she fed them and medicated Nathan--which is quite the cocktail to make...and only the most trusted of people can do this particular thing. Which, it's not brain surgery, it's just mixing some medicine in some ice cream and feeding it to him. Because you have learned that medicating him is the way to get him to calm down his brain so that he can go to sleep...and that hopefully he has fewer seizures during his sleep than he does when he's awake....and that shit is worth it's weight in gold--figuratively and literally--and you want to get every little bit of medicine into him so that he'll go the eff to sleep, yo.

And she brushed their teeth, and she may have read them stories, and she put them to bed. And at some point Caitlin came over. I am unable to recall if it was before the boys were in bed, or after. But it doesn't matter...she was there when I got home at like 9-freaking-30 PM!


Because I didn't even get wheeled back to the freaking OR till way late in the afternoon and then it took my surgeon longer than she anticipated because my tumor was bigger than she anticipated--the size of a lime--and then it was stuck to my skin. So I was kinda a tricky case. I seriously hope she had a delicious glass of wine that evening.

BUT, my lymph nodes--all six of them--the reason they injected me with the goddamned contrast that burned like a motherfucker and made my pee turn turquoise--were negative for cancer. Lucky. Lemme repeat that. She pulled a total of 6 lymph nodes, and had pathology run 3 different tests and all 3 tests came back negative for cancer. Thankful. Not Jesus. Just thankful.

And it took me a while to come too....and they gave me Vicodin...on an empty stomach. Oh, no...no...I think I had some chicken broth....and maybe a little chocolate pudding...and it came up...shocker!...because that's what that shit makes you do. And they asked me if I wanted to spend the night and I said no. No fucking way am I spending the night. Get me a wheelchair because we're on Two West, and I may not be able to walk to the front goddamned door, but I can sure the hell climb into my 4Runner and let my husband drive me home and spend the night in my own bed and see two of my most amazing friends and see my children in the morning. Thank you very much. I want to go home. And I will.

Randy will you please get the truck? Thank you. I love you. For being by my side. For loving me. For supporting me. For 20 years. For not leaving. Except when you went to Sergio's. And didn't even bring me anything. (bastard!)

And I got home and Bonnie and Caitlin were there and they helped me to bed--and I peed and told them not to flush the toilet because I was going to get it just the right shade of turquoise and then find some fabric to make a quilt. And I did. But my other friend Bonnie--and Micki--made that quilt, which is a post for another time.

And last year, on March 20, 2015, I slept in my own bed. Next to my husband. My Math Prof Rock Star. (Thank you Tam and Andrea)

I am thankful the year has passed.

Tuesday, March 8, 2016

A Little Fun in the Big City

Last week, Nathan and I went over to Seattle.

It was the first time we'd been there since February 22, 2015.

After I found my lump, but before I saw my own doc and he ordered a few tests.....

So, we went on Thursday afternoon for an appointment with his neurologist that was scheduled for 8:45 am Friday morning.

And this trip was different. Because of cancer. And because I'm still recovering. And, because I'm sick and tired of driving south to Gig Harbor, then going east through Tacoma and finally swinging north towards Seattle...I'm tired of putting that much time and energy into a 30-minute medical appointment when I know what the outcome will be....because I'm tired of saying "we have to do it this way because of autism".......

I made a change.

We took the ferry from Bainbridge Island straight into downtown Seattle.

When the boat unloaded, it was about 3:30. And from experience, I knew that had I driven around, I would just be hitting Tacoma at that time. And the freaking bottleneck at the Tacoma Dome because there are like 15 different state highways that converge right there. It's fuggin ridiculous.

So, we got to the hotel, and we weren't in our regular room. No, really, we have a regular room. And our autism got kinda big....but we did the best we could.

Then we went to dinner at a restaurant in University Village, which is near the hotel. Then we walked--very unusual--to QFC in U. Village to get ice cream so that Nathan could take his meds that night and the next morning. It was dusk, and the trees at U. Village are lit up with white string lights. The shopping center was busy and well lit; we felt safe. It was a pleasure to walk with my son and watch the jets from SeaTac fly overhead; to interact with him in a different place; to have peaceful and pleasant exchanges with him. To watch him be silly and confident. To think of him as a "normal" kiddo for a few minutes....

We went back to the hotel and he slept. I didn't. Because when you're recovering from cancer treatment, and you're a germaphobe, and you envision germs being lit up by a black light......

Nathan woke up about 4 am, ready to get on the iPad. It wasn't time to get up, obviously, so we eventually fell back to sleep. We were up with plenty of time to get to eat breakfast, stop at Tully's for coffee (real coffee drinkers know...you stop at Tully's, not Starbuck's) and get to Children's Hospital for our 8:45 check-in.

His appointment went well. The pediatric neurologist we've been working with for the past 3-1/2 years is fantastic. He spent about 45 minutes with us--no, really, 45 MINUTES. So, in total, counting the interaction with the medical assistant who triaged him, we were in the exam room for an hour.

And Nathan made it through the ENTIRE hour with NO iGADGET!!!!

He asked for the iPad several times, but he listened and interacted with his physician, and he got the iPad when we got to the waiting room when we were finished.

And then, we loaded up in the truck and I gave him a healthy snack of carrot sticks and homemade chicken nuggets (he ate them cold--I'm not complaining!) and I said, "should we go to the Space Needle?"

And he looked up from his iPad and said, "Yes."

It wasn't a "duh Mom" type of yes. It was a casual "you don't need to ask me twice I'll totally cooperate" type of yes.

We'd talked about it a little bit. He uses the maps app on his iPod and he's been going all over the world, seeing different structures: The Statue of Liberty, the Eiffel Tower, the Pyramids of Giza, and the Space Needle. My only fear with this is he'll end up in the Red Light District in Amsterdam.

So we did the Space Needle. And it was fantastic!

It wasn't cheap.

But it was worth it because we rocked it. We spent time together. We laughed. We smiled. We were cold. It was a drizzly, grey, windy, Pacific Northwest day. And we loved it!

Outside, on the observation deck, there was a mom who's little girl wanted to look through the mounted binoculars that Nathan was looking though. I worked with Nathan to get him to give the little girl a turn. The mom was very kind. He didn't have a hard time, but she was patient and kind enough to know that there was something up with my son; that he has an invisible disease.

She was tall and beautiful and friendly. We started talking. She was visiting from San Francisco, up for a basketball tournament. It wasn't her first time to Seattle. I told he we were from Port Angeles; she'd never heard of it. I pointed down at the ferry crossing Puget Sound and said, "We take the ferry across the Sound and then head north and then west for about an hour and a half."After a few minutes, we ended up trading pictures--I handed her my phone and she snapped several pics of us; and then I did the same for her and her daughter.

The kindness of strangers is something that I am, and will always be, thankful for.

When we were done playing with all the interactive stuff they have at the top of the Needle on the inside, we went back down, purchased nothing in the gift shop, and went outside to find the park we'd seen from our view on the observation deck.

On the way we found Darth Vader, who was not real, but held a red light saber. And he was accompanied by a Storm Trooper, who was real, and let me take a picture with him and Nathan and Vader. While he spoke to Nathan, he pointed at me, and said, "be sure to protect the princess, Trooper." And Nathan said, "Ok." I left him a few bills. Because this is probably how he's making his living. And it was cool. And that's what you do in the city. And it's something my kid will probably--hopefully--never forget.

We found the park and he played for quite some time, it seems Northwest Kids don't really get cold. The play structure at Seattle Center was very cool. Nathan got stuck towards the top; and he's afraid of heights. It was stressful to watch, and I started to become concerned that he was going to freeze, and I was going to have to climb.

But there was a dad there with some boys about the same age as Nathan, and he encouraged his kids to help my kid; and they did. Again, the kindness of strangers. Nathan is afraid of heights, but if there's a play structure around, he's gonna climb. I know he seized while he was climbing. I can sense it. Even when he's 20 feet in the air. But I'd rather let him be a kid.

It started to rain, and I mean RAIN. Umbrellas popped open (tourists!). And so we headed towards the parking garage, loaded up in the truck. We ate more cold homemade chicken nuggets as I drove towards the downtown ferry terminal and he played iPad.

I'm glad we took time out to be with each other in a way that we hadn't in over a year.

I'm proud of both of us for doing something new.

Even though it took us two days to recover from all we did, it was totally worth it.

And I'm so thankful that we got to have a little fun in the big city.