Friday, July 29, 2016

It's the Final Countdowwwwwwwn!!!

Image result for commercial geico final countdown

His face!  Hahahaha!!!!  Priceless.

So yeah, my surgery is one week from today.  Am I nervous?  Yeah.  Even more so than two weeks ago, when I was supposed to have my surgery.  Sheesh Loueesh.  I've had two more weeks to get even more nervous and anxious and sleepless.  The suspense is KILLING me!!  I know it will be okay.  I do.  I think most of my anxiety is centered around getting everything done that I need to before leaving town, and in making sure Ben remembers all of the appointments and things to which he has to take the kids in my absence.  And you know, driving in downtown Portland, and figuring out the trolley system for Mom so that she doesn't have to drive in downtown Portland when she goes back and forth from the apartment where we'll stay a l'hopital.  Whether I'll be able to set up wifi in the apartment.  Stupid crap like that.

When I said that I don't worry so much about the little crap, that was mainly true.  I mean, I'm still me, right?  So I get anxious about stuff.  But I'm maybe not as edgy as I used to be.  Which might be because I'm on really good meds.....  Haha!

And yes, I've double and triple-checked to make sure this thing is really going down.  I got the call from l'hopital to do all the pre-check-in stuff. I can't remember half the instructions they gave me. Am I supposed to avoid deodorant starting the day before surgery?  Two days before?  How many days before am I supposed to stop shaving my armpits?  It's a little foggy.  They really should send e-mails with this stuff.  I mean, hi, they deal with chemo-brained patients all the time; you would think they'd put all of this in writing!  I do remember her telling me that I have to shower with anti-bacterial soap the night before surgery, and then shower again with the anti-bacterial the morning of surgery, that I have to wear freshly laundered jammies, sleep in freshly laundered sheets, and change into freshly laundered clothes to arrive a l'hopital....  The really interesting stuff is the stuff I remember.

Let's hope that my surgeon has forgiven Ben for swearing at her; I'd really hate to have her leave a rusty nail in my gut as retribution.  Haha!  Naw, I'm good.  In case you missed it, my ma is going with me to Portland, and Ben is going to stay here with the ninos and work from home.  I think it will be fun.  We'll have to watch a whole bunch of British chick lit - we will have come full circle from when I was a Couch Person during chemo and we watched as many British miniseries and shows as we could.  We'll probably still giggle quite a lot.  Maybe even more so, because I'll have those huge painkillers in my system.  Blood grenades, here I come!

I'm going to have a LOT of downtime in the next month or so, so you'll probably hear more from me than you ever cared to.  And the writing will be.... interesting.  I remember trying to write thank-you notes after my mastectomy, and then I just got too tired to make sure people actually received said thank-you notes.  So maybe a month later, I pulled the pile out so that I could rip open the envelopes and add more thank-yous to each person - these people just kept helping and helping and helping, and I didn't want them to think I didn't appreciate all the different stuff they did, right?  So I ripped open these envelopes, and I was like, "Who WROTE these???"  The handwriting was unintelligible!  And the sentences meandered all over the place.  I mean, it was like, "ThankyousomuchforhelpmecanceryardbabysitbloodgrenadeshahabestpersonEVERmusthavemetin

Good times.

Am I nervous about the painkillers?  Yep.  They're hard to get off of.  I think it's harder emotionally than physically to get off of them.  Truly.  It terrifies me.

Am I looking forward to staying "in hospital," as the Brits would say?  YES!!  I freakin' love l'hopital.  I feel so safe there.  Truly.  Hospitals have helped me out many, many times.  I love having someone to take care of me.  I love drifting in and out of sleep.  I love the reassurance of an IV bag. Love the catheter.  DON'T love the food.  But that's okay.  I'll have my mom smuggle me in some good grub.

Kay, it's late, and I'm rambling, so I'll say hasta.  You might hear from me again.  If not, I'll see you on the other side!  I'll be sure to keep you abreast of any further developments.  Haha!  That never gets old...

Two years ago today...

Oh my goodness, Ben and I just realized that I went in for my double mastectomy exactly two years ago today.

I feel like I've aged a lifetime since then.

I was sifting through pictures to find the above one, and I got a little emotional.  I was dancing at Ben's neice's wedding.  I was playing with my kids in Lake Chelan.  I was loving my new house.  I was gardening.  I was so vibrant.  So healthy.

So I thought.

As I progressed through those pictures, there's the above the picture, and then maybe a picture of a bouquet or two, and then.... nothing left in that summer folder on my desktop.

It was rough.

Not pictured are the demons I faced when my children were at sleepaway camp, Ben was already working in Bend, and my darling youngest was thousands of miles away.  My darling dog - my dear, sweet Pepito! - was adopted into a new, loving home.

And I was alone.  In the house I had hoped to grow old in.

There was so much loss, all at once - Ben's job, my cancer, Gage's autism diagnosis...

I think I'm still mourning in a lot of ways.  I miss my old, vibrant body.  I miss my extended family.  I miss my dog.  I'll never have feeling in my left upper arm, or anywhere on most of my torso, again.  I miss not having to wear compression.  I miss gardening.  I miss a house where we could really spread out.  I miss my Idaho friends.

However, also not pictured is the overwhelming outpouring of love and support I received from hundreds - I mean that literally - hundreds of people.  People I had only met eight months before.  People I grew up with. My family.  Acquaintances.  People very far away.  People next door.  They landscaped my yard and painted my house so that we could sell it.  They watched my kids.  My sister took my youngest to Chicago with her and provided life-changing intervention for him, being a caretaker for him for five whole months!  My parents took me into their home so that they could care for me during the darkest hours I would face.  I was surrounded, enveloped, in love.

Not pictured are the hours I spent suffering on the bathroom floor, the sopping wetness of my parents' poor guest bed from all the night sweats, the terror I felt as I watched my body disintegrate before my eyes.  Not pictured is the panic that arose when I was rushed to the hospital with neutropenia and dehydration.  Not pictured is the weird feeling you have when you're severely dehydrated - you get the feeling that people are trying to talk to you, begging you to drink, and you just don't care anymore.  Not pictured is the relief you see when you see a nice, full IV bag that's emptying into your body.  Not pictured is the strange burning you feel from deep inside after each chemo treatment - like a full-body blush.  The pain from the shot that pumps up your white blood cells to fight infection. The incessant disinfecting, sanitizing, praying that I won't get sick anymore.  The tear-filled FaceTime sessions with Ben and my kids.  My shoebox full of medications.

Not pictured are the hours I spent curled in a chair next to my parents' fireplace, gaining light and knowledge and warmth from my Heavenly Father.  Not pictured is the constant, continual love and support from family and friends that I received.  Not pictured was a perfect re-alignment of my priorities.  A life-changing re-alignment.  That's what happens when you face death.  Not pictured are the hours my dad stood in line in the frigid cold with Micah so that he could pet a reindeer.  Or the hours my mom and I spent giggling, crying, and watching Elizabeth Gaskell movies, joking that I really was becoming long-suffering, because I had been suffering for soooo long... The small road trips she, Micah, and I took to see southeast Idaho in all of its autumn glory.  The look in my dad's eyes whenever he came home from work and came straight to the couch to see how I was.  The hours he spent looking over my EOB's and paying my bills for me.  My mom stubbornly insisting upon taking my temperature, and me stubbornly avoiding it, because I didn't want it to be too high and have to go to the dang hospital again.  My mom advocating for me with doctors and nurses when I was too weak to talk. My friend, Megs, and I spending as much time together as humanly possible before I would have to move.  And the gifts!  Oh, all the gifts people brought me and sent me and gave me.  People are so good.  People are so good.  Not pictured is the lovely lady who gave me a chance to teach dance when I felt well enough, and how much that healed me every week.  How it gave me something to look forward to.

If there was a word to describe how I feel after two years, it's this:  grateful.  I'm grateful that Heavenly Father saw fit, in his infinite knowledge, to let me stay on this earth a little bit longer.  I had more work to do.   I'm so grateful for the perspective this experience has given to me.  All the little crap that used to bug me is not a big deal anymore.  I'm a little more patient than I was before.  A little more empathetic.  I hug my kids more.  I hug my husband more.  I watch more sunsets.  I laugh off things that used to offend me.  I've truly gone through a refiner's fire to become better.  Stronger.  And I'm grateful for that.

Plus, now I get a chance to use the word "abreast" in a double entendre as often as possible. Example: Today I texted one of my dance bosses to let him know I'd be missing a teacher's meeting while in Portland.  Then I said, "Be sure to keep me abreast of any information you discuss..."

His response, "Ha!" seemed to have a little discomfort behind it.  Which I love.  One of life's great pleasures is making men uncomfortable by talking about girl stuff.  Haha!

Thursday, July 21, 2016


I remember first learning about sensory perception/processing disorder.  My adorbs friend, Shelly, told me about it - two of her kiddos have it.  It's really hard to describe; this is a spectacular article that really explains it in easy-to-understand terms.

Little did I know, when I learned about it, that I would have a child who would struggle with it.  Lots of autistic kids deal with sensory perception issues; Gage is hypersensitive in some ways and hyposensitive in some ways.  His hypersensitivities:

Loud Noises

Exhibit A - Fourth of July Fireworks

Bright Light

Exhibit B - at Tumalo Falls.  He might as well have been staring straight at the sun.  He will only wear sunglasses for a few minutes, and refuses to wear a brimmed hat.  Which leads us to....
Certain Fabrics

Exhibit C - at Richardson's Ranch near Madras, Oregon, in front of an enormous pile of lavender quartz - I die!  I am OBSESSED with rocks.  Anywho, notice the pants that Gage and Micah are wearing.  They refer to them as "soft pants."  Neither of them will wear jeans.

Certain Kinds of Touch

A light, tickling touch is unbearable to Gage, and sometimes he jerks his hand away from mine, or will arch backward when I try to bring him in for a hug.  But other times, he comes to me for a hug (he usually likes to back up into my legs to receive a hug.  Like a beeping, reversing FedEx truck.  Haha!) or slips his hand in mine.

His spirit animal is a cat, I think.  Only wants lovies when he initiates. :)  I'm not offended.  It's what he needs.

Now for Gage's hyposensitivities (a.k.a. He needs more input from his senses in the following ways - regular, day-to-day input isn't enough for him, and he seeks more):

Spatial Relationships and Moving the Body

Gage loves jumping, bumping and crashing activities... (bumper cars are a fave):

And deep pressure, like tight bear hugs.  I worked a lot in special ed this past spring when I was subbing, and we had an autistic kid who craved deep pressure.  There was a gymnastics mat - you know the kinds that fold up like an accordion, and then can be laid out flat?  And his favorite thing was being squished between two layers of those gymnastics mats.  His classroom aid would gently push on him from the top.  He was like the patty in a hamburger.

Spatial Relationships and Head Position

Gage is in constant motion.  He loves spinning around, rocking back and forth on the exercise ball, being tossed in the air (he loooves Ben tossing him high and onto our bed), and jumping on furniture and trampolines.  One of his first phrases when he finally started speaking was "Jump jumping!" which, in Gage Speak, was "I want to jump on the trampoline!"  We once had a trampoline.  And a yard in which to put that trampoline.  And a house which had a yard.  We had a lot of things.  Sigh.

Sometimes I get sad about that.

I digress.

So, as far as sensory perception disorder, there are kids who, when overstimulated, will cry, scream, get whiney, etc.  And then there are those who will avoid the thing which is causing distress, running away from the noise, hiding in a quiet room...  Gage is part of the first camp.  We find that, when he's getting overstimulated, the best way for him to "reset" is to do anything involving vestibular motion - the spatial relationships and head position thing I just talked about.  (And, BTDubs, my sister, Lexi, is the one who taught us ALLLLL of this stuff.  She works in pediatric physical therapy, dealing with lots of kiddos who have sensory issues.  She is amazing.)  He'll ask for "head squishes" - gentle squeezing pressure on his skull with the palms of our hands.  He'll start spinning around and around. He'll run back and forth between our front door and our back door, pausing at each door to jump up and down and flap his hands frantically.  He looooves rocking back and forth on the exercise ball, forward and backward.  Or he'll come for a hug and push to have both he and I rock dramatically left to right or front to back.  Or he'll jump on the furniture.

My favorite.  :)

I think all of us have a little bit of sensory stuff going on.  I find, as I get older, that I am more and more sensitive.  Something that has been off the charts sensitive for me, ever since chemo, is loud noises.  Gage's occupational therapist says it's very common for people who have had chemo, which I found fascinating.  I've done a little research on it, and it sounds like chemo will sometimes affect peoples' hearing.  A lot of people who have undergone chemo start to have hearing loss, but I haven't really read anything that definitively talks about hearing sensitivity and chemo.  But I believe the OT. She is sooooo wise, and has helped us so much.

For me, all of the small, background noises are the same as the important noises.  For example, my fabulous friend, Sara, took me out to dinner for my birthday back in April.  We were in a restaurant, and talking about this very topic, and to demonstrate, I said, "So that lady talking over there with her friend, the music over the speakers, the boy busing tables behind us, the cook frying things in the kitchen, and you and I talking, are all equally loud in my ears.  It's like the volume for all of them is turned way, way up."

I've read some things that say that the extreme stress that cancer treatment causes can make you more sensitive to noise, which I also find interesting.  That would describe the onset, but I'm trying to figure out why it's still hanging on.

Whatever the cause, it's obnoxious as heck.  I've kept earplugs in my purse for Gage when we're in loud restaurants, etc.  (He has a hard time keeping them in.  I need to just buy a pair of those noise-canceling headphones for him.)  But I find that I've started keeping a pair of earplugs for myself in my purse, as well.  And then I added a pair to my catch-all area in the kitchen.  Being Mom, I spend a LOT of time in the kitchen.  And our living room is right next to the kitchen, great-room style.  (Can a room that's, like, 30 feet by 15 feet be called a "great room"?)  Ben seems to enjoy watching TV at eardrum-bursting decibel level in the living room.  He also seems to enjoy tickling his children, which leads to them screaming either in glee (Gage) or dismay (Sadie).  Ben also gets hyper sometimes and loves to sing in a falsetto opera - one of these days, I seriously think he's going to shatter the glass of his big, honking aquarium which sits in our living room.  (I wonder if Ben is understimulated in his nice, quiet office all day and needs stimulation when he gets home...) Sometimes the kids will be yelling at each other in the living room. Or I'll have to put the fan on while I'm cooking on the stove top (which is as loud as a passing tornado, in my opinion).  And it's all I can do to keep from running from the house, screaming and tearing my hair out.  I'm a sensory avoider, as you can tell.

I use earplugs quite often in the car.  Because of the whole falsetto operatic singing thing.  And because Ben loves him some buttrock.  Or the kids will be yelling at each other in the back of the car. (They are particularly adept at yelling at each other.)  So I pop my earplugs in and slip off into oblivion.

I mean, I can still communicate with everyone while my plugs are in.  I just feel like they put the noises back in the priority they should be - I can hear my kids when they're talking to me, and it drowns out the TV/the kids fighting while they do dishes/microwave fan crap that should stay in the background.

Before it dawned on me to use the earplugs, I had to take little sensory breaks in my bedroom, covers over my head, door locked, hands squeezed over my ears.  I'm doing much better now that I've gots my beautiful little squishy, neon orange cylinders.

I also do yoga in my bedroom when things get a little too much.  It really helps.  My favorite is Yoga with Adriane on youtube.  She's fantastic.  I do yoga almost more for the mental side than the physical, I swear.  I just crave that peaceful, quiet place that it takes me.  All is right with the world when you've gotten your sweat on and are at the end of your workout, in savasana.

(How did they find this picture of me? As you can see, I've lost 40 pounds and grown boobs! You didn't know?  Weird!)


Actually, it's time for me to do some yoga for spinal health, so I will sign off for now.


Sunday, July 17, 2016

It's Been Six Months!

Sooooo...I was visiting Idaho recently, and I had a few peeps ask me why I wasn't blogging lately.  I feel badly.  I mean, I really do love writing.  I just got so stinking busy! Whaaat was I doing, you ask? Oy vey.  So much.  So.  Much.

I think I told you guys that I was working on getting my Oregon teacher's license.  It took some doing.  I've got a provisional license for now - I have to take a couple of tests before next May in order to get the full, four-year deal.  Something to add to my checklist.  I'll get some downtime for a couple of months coming up here, so I'll have to figure that out, study for it, etc.  

I've been applying for jobs, but so far, no bites.  It's alright; I've talked to a lot of teachers around here, and it's pretty tough to find a full-time gig.  I started substitute teaching in April, working at least a few days per week, and it was crayyyyy.  It was such an adjustment to go from stay-at-home mom to working mom.  I was so tiiiiiiiiiired all the time.  But it really was nice being in the classroom again. I mainly got calls to sub in elementary school, and one school 45 minutes south of the city I live in seemed to like me and call me quite a bit.  That was nice - it's hard going to a different school every day, never knowing where you're going or what you're doing.  And I'm kind of okay not having a full-time job; I was able to go online and mark the days I couldn't work.  My kiddos and I have lots of appointments, so I could have the time off that I needed to take care of all that stuff.  So if it turns out that I don't work full-time, I think I'm okay with that.  They pay subs really well here, too, which is awesome.

My dance teaching jobs really started heating up this spring; I had to choreograph several numbers, make some costume pieces:
... make some set pieces:
(this was actually a work-in-progress picture of a fallen log set piece - I forgot to take a picture of the final thing!)
..... attend extra rehearsals, and run auditions for next year's placements.  I didn't mind this kind of busyness one bit - I LOOOOOVE teaching dance!!!  It has been so healing.  Such a rush.  To watch the girls on stage, performing something that I created??  It's so emotional and incredible. 

I can't ever, EVER go back to not dancing.  It's as important to me as breathing.  And working with kiddos in a teaching capacity?  Count me in!

Dancing hasn't made my foot problems any better:

But I think an attempt to jog again really was the final nail in the coffin.  I not only worsened my plantar fasciitis, but I developed a nasty case of posterior tibial tendonitis.  I've had constant physical therapy, I have to tape it up every time I'm active, I wear orthodics, I do the stretches and strengthening exercises...  What has finally provided me some relief is this new therapy that's not covered by insurance, called EPAT.  Electrical Pulse Something Therapy.  The doctor uses this wand thingey, which taps your foot over and over with an electrical current.  It hurts a little bit - not too much.  The idea is actually to create inflammation, which is weird.  Everything I had done in the past was to reduce inflammation.  But to create inflammation stimulates your red blood cells to really go to work trying to heal the area that's been electrically shocked.  I've had more relief with this therapy than anything else I've tried!  I'm grateful.  I still have to baby my foot, though.  No more jogging for me.  I've started doing a lot of yoga.  I need to start swimming laps, or maybe try to get into spinning again.  

Micah really wanted to try ballet this year; he really loved it until about January or so.  It takes away his precious time with his friends, you see?  He fought me every single Monday night about it, but by January, he had already been given a part in a number - Prince Charming for Cinderella.  I told him that he had to finish it out, since the other kids were counting on him.  My boss actually taught his class and cast him in that role, but then we combined her class and mine, and she asked me to choreograph the number.  I created a little pas de deux to do with the little Cinderella.  It was so cute. He really struggled to learn his part, even until the very last rehearsals. 

Which makes sense.  We had him tested this spring by a psychologist, just to kind of pinpoint what it is that causes his rage; but I also had the psychologist check to see if there was dyslexia or some type of learning disability - he still really struggles to read, even the easiest of words.  So the final verdict: He has dyslexia, discalcula (dyslexia with math), a processing disorder (an inability to process, interpret, and retain what a person learns), and some kind of mood disorder - she thinks he may have the early symptoms of bi-polar disorder, but we'll know more about that when he goes through puberty.

Was it hard to learn these things about Mike?  Not really.  I already had my suspicions about all of these conditions; as his mommy, I probably know him better than he knows himself.  And this Micah, the Micah who struggles, has always been.  It's not like he was doing great one day and then suddenly not doing great.  He's struggled since the day he was born.  I don't know any differently.  I think I've mourned more for Gage than with Micah; Gage seemed perfectly normal until 14 or 15 months of age, and then suddenly, my sweet baby was gone, and my autistic son emerged.  I still struggle with that.  But Micah has always been...enraged.  Difficult.  His meds take the edge off; he's gotten a little more aggravated this summer, as he's spent more time with his siblings, but he's doing alright for now.

Cancer Stuff:  So, I've only recently figured something out - these bouts of horrible, horrible...ah...dysentery (wink, wink) would happen almost two weeks to the day from each Herceptin infusion.  Not every time, but maybe every other time.  I never really put two and two together before.  In fact, I had a really bad bout two weeks after my very last infusion.  It was so intense, and my dehydration so swift and violent, that I started having seizures.  I was hospitalized overnight, and glad to be.  It was really scary.  I haven't had any more problems with that ever since February.  Thank goodness.

I see my oncologist (Dr. Existential Crisis - seriously, we discuss religion and life and God every time I go in) every six weeks or so.  He still insists that we don't need to do any scans on me.  I guess this is kind of the new thing - you can get more accuracy by feeling for new lumps or changes. I think that, if I had stage 4, or we hadn't gotten all of the cancer out with the mastectomy, we'd be doing scans.  I'm okay with it.  They flush my port every six weeks when I go in.  My local surgeon (Dr. Pirate) checks my chest every couple of months for any weird-looking changes or anything alarming.

Something new, and obnoxious that happened:  In March, when I saw my Portland surgeon, we scheduled my surgery for July 14th.  We scheduled my last pre-op for the day before surgery, and we even scheduled my post-op appointment.  Ben has a client with an empty apartment in Portland, and he offered to have us stay there after surgery.  I was to stay in the hospital for four days or so, but still stay in town in case anything bad happened, for the next seven days, Ben taking care of me.  Ben's mom was going to come down and be with the kiddos during that time, Then my mom was going to come out for two weeks, for when we came home from Portland.  She had bought the plane tickets and everything.

You can tell something bad was about to happen, right?  That's Foreshadowing, baby.  So I get a reminder call for my pre-op a couple of days before, we're all ready to go, Ben and I drive over there, we get to the pre-op appointment, and we meet a nurse.

"So, Mrs. S, I see here that you are allergic to Omega 3 Fatty Acids?"

"Um, what?"

"You're allergic to fish oil, right?"

"Uh, no.  Not at all.  Not in the least."

I should have known something was wrong right then and there.

So we figure out that I'm, in fact, not allergic to fish oil, we update my med list, etc.  Then the Physician's Assistant comes in, he makes sure I had pre-op photographs taken (I did back in March), asks me if I have any questions.

I say, "Yeah.  Uh, when am I supposed to check in at the hospital tomorrow morning?"

"Um, what?"

"You know.  For my surgery.  Tomorrow morning.  Here."

"I have you down for August 4th."


You get the idea.  So, um, somehow, the scheduler back in March had scheduled my pre-op and post op, but apparently, not my surgery.  My surgery was given to some other lady.  Frown.  I burst into tears and cried for a good two hours.

The PA had my surgeon come over from the hospital (an airbridge away) to try to clear things up, but there was nothing she could do.  According to her.  We asked if she could maybe do my surgery in a couple of days?  Nope. Her partner (this surgery requires two surgeons) will be on vacation then, you see.  For a good two weeks.  Ben and I explained that people had driven for hours to help, that people had bought plane tickets.  Nope, nothing doing.

I was devastated.  I cried and cried and cried.  Looking at it now, it's not THAT big of a deal.  I guess it's just....I have been waiting for two years to be made whole, you know?  To have my final step pushed back, even by only three weeks, was hard.  And I felt really badly about my mom's and mother-in-law's sacrifices and expenses.  Sigh.

And then there's the issue of recovery time.  I've been told it will take two months; which is why I scheduled it for the summer.  The new date - August 4th - will push my recovery into the new school year, which will affect my ability to substitute teach and to teach dance.  C'est tres frustree.

Ah well.  I have to keep reminding myself that at least I'm alive.  And I'm sealed to my family.  (If that sounds weird, I'm a Mormon - look up sealing on!  Good stuff!)  And my mom, after four hours on the phone, was able to switch her flight without a penalty fee.

As a consolation prize, Ben and I ate at an amazing place in Portland called Tilt:

We went to the temple trip:
(More Mormon stuff!!  Look up temples!)

We slept one night in the fabulous apartment with a beautiful view:

And I got a proper cut and color, by someone besides Great Clips and myself:
I loooove it!

And I get three more weeks of summer fun before becoming, yet again, a Couch Person.  The apartment will still be available in August, as well.  So it will be alright.

Kay, I've gots to go.  Hopefully I'll write soon.
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