Monday, June 5, 2017

I Asked

So, we're sitting in the Radiation Oncologist's office, you know, like you do....

Kinda glad to see him...kinda not.

He's the one responsible for, essentially, being a main player in the medical team that saved my husband's life last summer. 

And he kinda looks a little like Paul McCartney.

He could've been a Beatle.

Or a child of a Beatle, anyway.

He's easy on the eyes.

I wouldn't kick him out of bed for farting. 

Don't judge.

Just because I'm on a diet doesn't mean I don't look at the menu.

I got eyes.

Anyway....

The Radiation Oncologist walks in, and he's got a very casual bedside manner, and he's incredibly smart. So we're chatting away and he does his exam and he reviews the notes from the Lady ENT and we talk about Randy's upcoming throat surgery, which is scheduled for later this month.

And when he said, "Do you have any questions, Mrs. Anderson?"

You bet your sweet ass I have questions.

Here's the thing, Dr. J, I've got a pair of kids at home who are tapped out. My family has been dealt a lot of life, particularly in the last two summers.

Nodding from the doctor.

My 8-year-old looked at me point blank and said "Mommy, I'm afraid I'll get cancer. I'm afraid my brother will get cancer. And I'm really afraid that you and Daddy are going to get cancer again," and so, I need to know, Doctor.

More nodding from the doctor.

He's a very attentive listener.

I know you can't say 100% for sure until the warts caused by HPV on my husband's vocal cords are removed and biopsied, but in looking at the research, in your experience, with your best gut reaction on this, speaking from an epidemiological perspective, what are you thinking? Do you anticipate that this is another summer full of cancer?

I do not, Mrs. Anderson.

Silence from us.

I know each of you, as well as your boys, have been through a huge...amount of...major life occurrences...in a very short amount of time. But I do not anticipate that you'll have another summer full of cancer.

We have the PET scan from the end of February and the results were negative for cancer cells. We have the fact that your husband's taste is returning, his saliva production is increasing. On a visual exam of his throat, it looks really good.

Exhale.

And, no, I cannot be 100% certain until we get the biopsy. But I can say that I'm pretty certain that this isn't cancer of the vocal cords.

Ok. Thank you, Dear Doctor, for you have helped to instill hope into my heart.

A little bit later, as my husband and I sat eating Mexican food for lunch, enjoying each other's company, we agreed that the Radiation Oncologist did not say what he said to pacify us. We do not feel that the Lady ENT said what she did to placate us. We recognize that several friends have been diagnosed with cancer who kept receiving misdiagnoses. And our hearts break because of the countless situations across the globe where people are dying because of this fucking disease.

My husband, who is a very logical thinker, goes back to the fact that we don't have data about the warts on his vocal cords. So, for now, we're continuing to focus on what we know: surgery is coming. We're trying our best to remain calm and centered. And enjoy each day.

The next step, before surgery, is for my husband to get approval from his neurologist before receiving sedation from the anesthesiologist. Because the last time my husband went under for surgery was June 30, 2016, and that could have gone much better.

So, today, my husband was in Seattle, seeing his neurologist, who ordered an outpatient EEG be done before surgery. The EEG is scheduled for Friday. An electroencephalogram (or EEG, thank god for acronyms, right?!) is where they hook your head up to about 20 electrodes--and a few on your chest to monitor your heartbeat and respiration rate--and they are looking for seizure activity. I've been through countless EEG's with our older son, and all I can really say is, "thank you iPad." It doesn't hurt, but glue and hair don't really mix well. We're both thankful my husband is bald. 

My husband had an outpatient EEG last year, after his seizure in the operating room. Last time, the results were normal; and the neurologist anticipates the same this year.

The thing about EEG's is they totally suck because you cannot sleep more than 3-4 hours prior to the test.  No coffee. No chocolate. No soda. No caffeine. They are looking for abnormal brain activity...and caffeine makes our brain kinda active...and it can skew the results. And ain't nobody got time for skewed results.

So, he'll go over on Thursday and stay up late and then get up super early and go to the hospital for his 7:45 am appointment. The test should take about 90 minutes, and when the EEG is done, if he feels like he needs to, he can go back to the hotel, and take a nap. If he feels ok, then he'll catch the ferry home. He can sleep on the boat.

The neurologist said we'll have the results the next business day. So, we are cautiously optimistic that we'll know for sure surgery is a go on Monday, June 12th. But, let's be real...more like Wednesday, June 14th.

During finals week.

Three days before commencement.

No pressure.





Thursday, May 11, 2017

Of Course, But Let's Hope Not

Of course.

Of course you're having another surgery.

In your throat.

With a laser.

Can we stop, please?

Can we just please stop the fucking ride?

Let's hope it's not cancer.

Again.

Let's hope it's just warts caused by Human Papillomavirus.

On your vocal chords.

That the goddam backcountry half-assed Poulsbo ENT thought were polyups. Or nodes. Nor nodeules.

He never said warts. 

But the Lady ENT never said warts either. She said polyups. Or nodes. Or nodules.

And The Man ENT, when he removed your tonsil and sliced your neck open and took out lymph nodes just last May, and we asked about the polyupie-nodey-noduley-thingies on your vocal cords but he couldn't take them out because that's not his area of expertise and he'd leave it up to the Lady ENT.

Wait. What the fuck? 

Because if a throat is like a vagina, and a tonsil is like a cervix...I don't go to see one doc for the front of my vagina and a different doc for the back of my vagina. I mean, it's all one vagina. So, isn't all one throat?

Goddamn healthcare system is too big and too specialized and that's where you thank Baby Jesus for the Master's Degree in Community Health Promotion, because you know how to work in and with the system. But it shouldn't be this fucking hard.

"Nobody said it was easy. No one ever said it would be this hard"

The bottom line is that no amount of study, level of education, faith in God, or lack there of, can prepare anyone for what I've walked through. What we've been through. What the boys have been through.

What we continue to go through. Just. Fucking. Stop. Already. Please.

I've prayed. I've bargained. I've cried and begged and ranted and yelled and screamed and lost sleep and lost weight and have had no appetite and ate even though I wasn't hungry because it had been several hours since I'd eaten a graham cracker with peanut butter....

I've questioned my belief system, the way I was raised, the tattoos I have, the choices I've made...the people I've had sex with...and thankful for the ones I didn't....

I've practiced yoga, and I've journaled, and I'm following the rules to the best of my ability, but I'm having to make new rules for me and my husband and my sons as we go along.

Yet still it continues. The health issues that plague my family are enough to make anyone feel like driving off a cliff. Epilepsy. Autism. Breast Cancer. Tonsil Cancer.

And when my 8-year-old looks at me, pleadingly, and says, "Mom, I really want to make it through this summer without cancer."

All I can do is look him in the eye, be honest, and say, "I want that, too honey," and then wrap him up in a the best Momma hug I can give him, as tears run unashamed down my face and land upon his beautifully dark hair. 

The boys don't know you're having surgery next month. They don't know the ideas I'm generating. The planning. The talking with close friends who we trust to medicate with proper doses and at correct times. The phone calls, texts, emails that have started. The hotel reservations. The dog sitter.

The anxiety, though, the boys know it's there. I had a delayed reaction after our meeting with the Lady ENT on Monday (thank you FaceTime for letting me be there in the best way I could). After I picked them up from school and we got home, I dissolved into a hot, wet, dripping, steamy pile of mush on the kitchen floor.

As I was preparing their snack.

I'm classy like that.

The Lady ENT will remove the warts and have them biopsied. Surgery will be at the end of June, after school is out. 

I am thankful, my dear husband, that you are confident that your cancer hasn't returned. I know the PET Scan you had 6 weeks ago indicated there was no cancer in your throat. I am doing my best to be optimistic, too. But, I am more frightened now than I was when I received each of the diagnoses our family has received over the past 6 years. I love you, and am terrified for you, for us, and our children. 

Fuck you cancer. And HPV. You are one sneaky little bitch of a virus. Even though they can't really get them till they're 11, both of my boys are ready for their HPV vaccinations so they don't have to go through this. They watched the hell their father went through last summer. We've had deep discussions with them about the fact that even though Daddy was too young to be part of the generation that routinely had their tonsils taken out, and he was too old to get the HPV vaccine, if there was one thing I could change for Daddy is that he didn't have to go through tonsil cancer treatment.

Of course I will do everything in my power to not have my kids get a disease. And let's hope that the blog posts, and the education, and the science is enough to convince people they can prevent their own children from having to contract the disease.






Sunday, May 7, 2017

Interesting Day

Today was an interesting day in that I learned, at about 4 am, raccoons eat bird seed.

I also learned, that if you bang on your own bedroom window, five times, really quickly, and rather loudly, and then shine the light from your iPhone onto that racoon, they get scared and jump.

But they're brave, so they come back.

Because, really, a lady at four am banging on her own bedroom window, while her husband whisper-yells, "NOT SO LOUD! YOU'LL WAKE THE BOYS!" while you're standing on her deck railing and hanging from the bird seed feeder, stuffing your face, isn't very scary.

But, when I got outta bed and got my Bogs on and stomped on the deck, that fucker took off.

I had my Maglite.

I left Abby in the house, because, as wonderful as she is, she's not particularly stealthy, and we didn't need her to get tangled up with a goddamned raccoon. Not that I need to get tangled up with a goddamned raccoon...but I have the ability to travel a bit more on the down low than a 9-year-old black lab at four o'clock in the morning.

BAM BAM BAM!!!!! I stomped out the back door and towards it. I heard the varmint scramble down the wooden posts and skirting of our house, squealing, or chirping, or whateverthefuck kinda noise they make, and scurry up a nearby tree.

Heh. Bitches. Wake me up at four in the morning.

I could see the glow of it's eyes in the tree, and for a second, because I come from a long line of paranoid Jews, and I'm a firm believer in The Boogie Man, The Closet Monster, and The Thing Under The Bed, my heart jumped into my throat.

But then I took a breath and flipped that raccoon off and slowly backed up, facing it and keeping my Maglite on it, and walked down the side of the house to the back door.

I took my boots off at the door, like you do, and headed down the hall to our bedroom, and got back in bed.

And promptly heard the party start up again.

Bastards.

Assholes.

I'm trying to fucking sleep, here!

I threw back the covers and announced: "I'm going to pull the seed feeders," to my husband, who loves me very much, is very tolerant of me, and knows that the best thing to do is just let me do get the seed feeders and then go back to sleep.

Back down the hall, Bogs on, grab the Maglite, and head back outside. STOMP STOMP STOMP down the back side of the house, grab both feeders and brought them in. Then grabbed the other two feeders on the front side of the house and brought them in, because you may as well get all the food outta the area. Don't do a job half-assed. Only whole-assed for the Andersons! Also, I don't need a goddamned raccoon in the back yard when Abby goes out there in a couple of hours.

In the morning, I filled the boys in about the raccoon and why the seed feeders, which were sitting by both the front and back doors, but that they had, perhaps not shockingly, observed yet. They were busy watching a soccer match. I told them that later we'd be outside and they could go on raccoon patrol.

Today was a beautiful, bright, sunny day, and we spent much of the day outside, working in the vegetable garden, and hauling compost. When I asked the boys to help out by peeing off the side of the deck near where the raccoons were at 4 am, they were more than happy to help. They also peed near the compost pile, just to be on the safe side. And they took a hike in the woods and probably peed all over the place, like boys do.

Whatever. Thanks for helping out. Seriously. You guys rocked it.

So, now, for a while anyway, the seed feeders are sleeping inside.

Working hard

I said, "Please get a hat on" but wasn't specific about a sun hat
Zen moment at the compost bins

Team work moves compost!


It's hard being him....

Saturday, April 29, 2017

Birthday Eve

"Mom, those are bows. Not giant flies," he said to me as he drew his last picture of age 7.

Tomorrow he's 8!

How do you do this, child? Because drawing isn't my area of expertise. But you, son, you are talented.

 "I can tell," I say. "You've really been practicing a lot. How's the new mechanical pencil?"

"It's pretty cool. Thanks, Mom."

He found an orange mechanical pencil the other day after school, as we walked across the parking lot. As usual, we were the last to leave. The sun was bright and warm, but the wind was whipping in off the straight, blowing at a minimum of 20 mph, but gusting much higher. 

I know because I could feel the wind blow in my hair. Don't take that for granted. There was a time that my hair used to blow in the wind and I'd feel it all the time and I'd get pissed when it whipped me in the eye because that shit hurts! I'd be trying to get a goddamn hair tie or a scruncci or a whateverthefuck I could get my hands on and in my hair and had a messy bun before there was such a thing. At this point in life, I don't have the time or energy or patience to let my hair grow in. I don't know if I'll ever grow it out again. Cancer has a way of slapping you in the face with a feeling of deep uncertainty.

So he found a bright orange, mechanical pencil, with a 0.5mm lead. I keep telling him there are benefits of having awareness. Of seeing details. Of being quick and observant. Of being short, because if you're lower to the ground you can see things on the ground. How amazing his brain is. How different. The differences between the two of them. And of course there was an issue with the pencil as soon as we got to the car.

Because also as usual, his older brother was trailing behind us, and every few steps I'd have to stop and yell a variation of "hurry-up-come-on-let's-go" and then he'd yell "MOM! Parenting's like pushing rope!"

Yes. Yes it is. He gets that from me. The humor. That's all me.

So, the little dude is gonna be 8 tomorrow! Sweet Jesus, how time flies.

Unless you're in my family. Then it drags like a motherfucker. Major, life-altering, traumatic, health-related events will do that to a person. More than I ever anticipated. More than I ever studied. Nothing can prepare a person for any of it. What is the lesson? I try to be easy on myself. "Do. Or do not. There is no try."

Yes. Exactly. Stop trying so hard. Do. I express myself. I teach. Maybe I need more yoga. And more sex. And walking. But not walking and sex at the same time. Humor. Gotta have humor. I let the good in where I can.

I bumped into a friend today, when my older son and I were out running errands, including a Lego run, where he purchased a gift for his younger brother with his own money (what?!), as well as a quick look for 0.5mm lead that I couldn't find so I got a 2 pack of mechanical 0.7mm lead, and the pencils were green and blue, which is a major win because each child gets his favorite color. We also did a grocery run, a post office run, a pharmacy run, and Swain's. Because they have everything. Including one of the Ducks

Yes, you absolutely can have your picture taken with the duck.
We visited for a few minutes, and then my friend kinda summed it up when he said, "Man, your family just has a lot of bad luck."

Because that's one way to look at it.
 
And I said, "Yeah, that's one way to look at it. But we keep moving forward." Because, really, what else can you say? And, what else can you do?

And my son said to our friend, "Wow you've got a lot of popcorn!"

Because Swain's has popcorn. Obviously. They have everything.

And, no shit, this dude had like 8 bags of Swain's popcorn, stuffed into two plastic bags. And he reached into one of the plastic bags and gave a bag to my son, and offered one to me, which I politely declined. I have some self-control. Not much, but some. 

Anyway, self-control. Super important for 8-year-olds to learn. Hopefully this year will be joyous for this child. Because when I look at him and what he's been through, he's got a shit ton of life that's happened to him.

My heart hurts for him because his normal is high stress. He's a child who has trauma. And I know what the research says about a high stress environment on a developing brain. And it terrifies me for him. So I don't read the statistics. I did when my older son was diagnosed six years ago with epilepsy, and I know I'm one click away from going down a very deep dark rabbit hole. And you don't bloody your fingernails crawling out of the epilepsy rabbit hole to be thrown into the autism rabbit hole and the breast cancer rabbit hole and the tonsil cancer rabbit hole, just to voluntarily throw yourself into the negative health implications of trauma and stress on the developing brain rabbit hole.

So, my beautiful boy....

My fun-loving, clever, quick-witted, athletically talented, super-smart, artistically driven, drama-king, flirtatious, brave and courageous, mathematician, who is full of kindness and love....

May this year's trip around the sun grant your wishes and bring you joy. May you find wonder and excitement in each day. May you continue to hug me and your dad. And tell me you love me. Because I love you, too. 


6 weeks old; hiding out in the bathroom from his brother


All my love always. Lots of love and hugs and kisses.
Love,
Mom
xoxoxoxoxo

Sunday, April 23, 2017

Swallowing Pills

My older son was diagnosed with seizure disorder when he was four years old.

When he was first diagnosed, the pediatric neurologist immediately put him on a drug to control the seizures, which is called Depokote, and is known to cause liver problems. Possibly. So we had to have him go to our local doctor's office, get his blood drawn every three months to monitor not only the level of medication in his blood, but to make sure his liver was functioning properly. Then our doc's office would fax the lab results to the pediatric neurologist, and I'd pick up a hard copy, just in case, and because I'm that mom, before we'd go to the children's hospital in Tacoma for the appointment with the pediatric neurologist. I'm thankful our family physician supported us doing this, because nobody's got time to drive 2-1/2 hours in one direction for a simple blood draw.

We had to medicate our son twice each day. So, we mixed that shit up in ice cream.

Because, what 4-year-old is going to say no to ice cream twice a day?

Rigth?!

When he was six, our son was diagnosed with autism spectrum disorder. Yes, he's vaccinated. No, his vaccines didn't cause his autism. And if you're going to argue, then please stop reading right now. And fuck off. Because that's not the point of this post.

Also, all that shit was proven to be falsified.
 
Anyway, the point is: medication.

Over the past six-and-a-half years, my husband and I have become quite skilled at breaking pills, crushing pills, mixing meds, tracking side effects of the now seven different pharmaceuticals, along with various combinations of pills, which is known as a cocktail.

Most of the medications we've tried to keep our son's seizures to a minimum have come in the forms of pills, capsules, or liquids. One medication we tried came in either a liquid or a gel cap. Based upon the fact that our son couldn't swallow pills, we chose the liquid, since, at the time, our child wasn't really old enough to understand. And, going with our new pediatric neurologist's advice, who said it is really difficult to get the gel outta the gel cap.... Yup. We chose liquid.

Which was brilliant until our son decided to not drink it.

So I called Seattle Children's Neuro...and we got the gel caps. And lemme just say, it really is a fuckin' mess to get gel out of a gel cap.

Even if you use a really really really sharp quilting needle.

On the upside, we switched meds, since we never were able to effectively use that medication because we couldn't get it in him.

No, I don't remember the name of the medication. Sorry. Yes, it's in the attic somewhere in a box with all the other medical records. We've tried so many different meds to control seizures...and really...when your child's pediatric neurologist, who you know cares about your child and your family says, "Well...your son didn't really read the book on how to most effectively have epilepsy" and "he has a rare form of epilepsy called Lennox-Gastaut Syndrome" and "he's not likely to out grow his seizures"...no matter who you are, and how optimistic you are, you start to wonder if he'll ever be able to do certain things...like drive...or take a shower alone...or swallow the pills his brain depends on...so that his brain stays on and he doesn't loose consciousness for 2, or 3, or even 4 or 5 seconds...10 or 20 or 50 times each day.

He's had more than 50 seizures a day. When he was little, and before we knew what we were dealing with...he'd have hundreds of 1-3 second mini seizures. Hundreds. Where his eyes would flit back and forth. He'd sway, like a tree in the wind. But I didn't know. I didn't know he was seizing..... But that's his epilepsy. 

An EEG confirmed it when he was only four.

But now he's 10-1/2.

And can swallow pills.

No shit!

His dad and I are beyond excited! And we are incredibly thankful to his Special Education teacher for teaching him. She's quite aware of the fact that my son takes meds, and what they are for.

He is currently on three different medications: two are for seizure control, and he takes each of those twice a day. One is for sleep, because he literally cannot stop his brain from thinking and talking and doing. And, when you are a person living with epilepsy, regular sleep is vital because if he doesn't sleep, he seizes more, and that's typical in people who have seizures. If he gets adequate sleep, like 11 hours a night, then he seizes less. He requires that much sleep because he seizes. It's a total chicken-or-egg situation.

And he's tired a lot because his brain works harder than mine to get through the day.

But he's swallowing pills!

No more mixing them in apple sauce. Or pudding. Or ice cream.

I mean, what 10-1/2 year old wants to eat medicine flavored anything?

Right?

And so I have a little hope.

Because his pediatric neurologist, who really does know his shit, said that most kids don't swallow pills till middle school, because they see other kids doing it and they feel a little peer pressure.

So, tomorrow, I'm calling Seattle and letting them know. And asking for a new 'script for gel caps.

Thursday, April 20, 2017

They earned it!


We had ice cream for lunch! They earned it! So proud of my guys!

Honestly, I'm also proud of me. I'm taking the advice my therapist gave me years ago, and recognizing what I did. 

I loaded them up everyday. I drove them to the pool everyday. I worked with them as a team. I created a happy environment for us. 

So I had ice cream, too! 









Thursday, April 6, 2017

Ice Cream for Lunch

I'm open to that.

Ice cream for lunch.

But here's the deal: we're going to the pool, for swimming lessons that you said you wanted to do each day of the week for spring break.

And we are to arrive on time.

All five days. 

Yes. It's a class. You're having a lesson. Every.single.day. For thirty minutes.

It's gonna cost me and Daddy 50 dollars to get this done. Which, really is a song. No, Nathan. It's an expression. Please, Isaac, yes, I'm looking into drama camp. But we're talking about swimming. Pay attention. 

Because I'm totally down for taking you guys to the pool every day for a lesson if you guys are down for it.

But here's the deal: if you choose to not go, it will cost you five dollars per class. Right. You pay me and Dad five dollars. Per class. Yes. Just like Hapkido, which is actually eight dollars per class. So, that's why swimming is a song, because it's less expensive. It's just as important. Yes, Nathan, parenting is like pushing rope.

Got it? Five dollars if you miss. Unless you're sick, then I'll cover the cost of your class. Right. Five dollars is a lot of money. So we want to be sure to get there on time and swim and listen to the teacher. Right?

Yup. That's a lot of Abby poop to pick up. I'm really thankful we have a big backyard so that we don't have to pick up Abby poop a lot. Yup. Everyone poops. And she's a big dog, so she makes big poops.

And what's awesome is that when you feed her, she goes outside and makes a bunch of poops and then you get to pick it up and earn ten cents per poop. So, really, when you feed the dog, it's like you're guaranteeing yourself some money. It's an awesome return on your investment.

But let's talk more about swimming. Let's make a social story so that Nathan's autism doesn't get too big and he gets overwhelmed and all hell will break loose and then nobody will be going anywhere, ever.



So, we sat down and created a social story in order to try our best and be successful. Here's what we came up with.


Isaac, my perpetually planning child, I don't know where we'll go for lunch on Friday. Let's figure it out as it gets closer. I don't know if we'll go to Jimmy John's, Nathan. I thought you wanted to go there when you earned your next belt promotion.

Oh! I know! Let's take one day at a time and see how we're feeling. I mean, you guys are on spring break, which is a vacation from being at school, so since we're on vacation, maybe we'll have ice cream for lunch!

Yes. I know your heads just exploded because I said we'd have ice cream for lunch. Yes. I'm seriously open to that. But here's the deal: we've got to follow the social story, and most importantly, we all need to earn five check marks.