20 minutes, 4 times a day

It's only 20 minutes. But it's 4 times a day.

It's about the same amount of time as Phineas and Ferb. 

Actually, it's 2 minutes less than Phineas and Ferb.

It's about the same amount of time as it took to feed the boys when they were each nursing. 

Just 20 minutes. 

Four times...every...day....

That's the goal. 

The minimum is 2 times a day. Lynn the Radiation Oncology Nurse said that in order for it to work, you have to do it at a minimum of twice a day.

Friday was a busy day, and I reached the minimum level, but it was the highest level I could achieve. Two. Two times. I tried my best.

I'm trying my best to do 4 times a day. Saturday was 3 times. My goal today is 4 times. I am trying my best.

The radiation techs said my skin looks really good. That normally by this time, with 11 sessions of radiation under their belt, a person's skin is usually pretty pink, and incredibly sensitive. 

But my skin looks good. And if anyone's going to be honest with you about what they see, it's the radiation techs. 

And Lynn the Radiation Onlcology Nurse, who really is a freaking Rock Star. Lynn the Radiation Rock Star Nurse. She sees my boob once a week at minimum, but really whenever I need her to. You know, like when some new spot shows up on your breast and you're convinced it's skin cancer. Even after chemo and in the middle of radiation (because they're shooting fucking RADIATION into my BREAST! So skin cancer totally makes sense!). But she says to keep moisturizing like I have been, because it could be the beginning of a blister. We need to keep the girls moist. Both of them. Balance in the Force. Duh.

Anyway...

In a clean plastic container, I make up saline solution: 16 ounces of water, 1/2 a teaspoon of salt, and a pinch of baking soda. 

Then I pour the saline solution onto a brand new bamboo baby washcloth, purchased specifically for this purpose, because Lynn the Rock Star Nurse said so. Do what Lynn says; she's been doing this over 25 years. Rock. Star. 

Next I lay down on my bed, with towels, and put the soaked and dripping washcloth on my right breast. 

It's cold. Well, it's room temperature. So guess what, I turned the heat up. 

"Wet wound therapy" is to keep my skin moist, prevent blistering, and soothe my skin. 

Pat dry. Apply Radiation Oncologist approved cream concoction: 50% CeraVe SA & 50%, 1% hydro-cortisone cream. 

The goal is to do this 4 times a day, for 20 minutes at a time. 80 minutes. Not quite an hour and a half. Ok that's doable. 

Wait. What? Four TIMES a day? 

By the time I make the saline solution, get my towels, get myself situated, lay down, treat my breast, get up, pat dry, put everything away, and then massage the cream concoction into my breast, we're talking 2 hours, total, each day. 

Who in the fuck has that kind of time? 

You mean there's something else I have to do to take care of me? 

Oh Sweet Jesus! 

How do other people do this? 

Do other people do this? 

I've got shit to do!

I've got people I need to spend time with! 

Fucking cancer. Fuck you. 

Is this bullshit ever going to fucking end?

Goddamnedcancer. This sucks. 

Stop it. Reframe that shit. 

I'm able to give me two hours each day to be kind to myself. 

But my breast aches...from deep inside....

To help prevent blisters that will ultimately pop. 

It'll hurt worse if you don't. 

Prevention--what you specialize in. 

To help prevent pain. 

Prevention--what you went to school to be able to do professionally. 

To help prevent infection. 

Infection equals treatment. Not your specialty, Rachel. You are Prevention. Social Workers. Nurses. Chemical Dependency Treatment Providers. Those guys know Treatment. But you, you are a Prevention Woman.

To rest. 

No pressure. 

To read. 

The boys are fine. 

To blog. (They've got an app for that....)

Randy's got them. 

To take a much needed, 20 minute timeout, for me. 

Thank you Randy. 

To be better. 

Thank you boys. 

Because I am strong. 

I love you guys. 

And I am alive. 

Gratitude, 11/5/15

Today I express gratitude for having the courage to say "I found a lump in my breast."

I am thankful I examined my own breast. 

Have you examined yours?

I did again last month, for the first time since before my lumpectomy back in March.

My heart was in my throat. 

I held my breath and was scared out of my fucking mind. 

Even after going through chemo.

Even after all that shit and being sick and crying and feeling like I was underwater, deeper than I've ever been, deeper than I am comfortable with...trapped...heart racing...scared.

Terrified.

What if...?
 
Tears stream out of my eyes and into my ears. 

The dog barks. Returning my mind to the present.

I'm on my bed. 

My fingertips are on my breast. Thank you, Miss Abby. 

My scar. You're so good to live with me and these crazy men.

Tender. She's the only other female in the house.

My lovely dog who helps me with my cancer. Thank you.

I do love you. 

Even if I'm cranky and I yell. 

I breathe. 

And continue to examine my breasts.

Have you examined yours? 

And if you found a lump, would you have the courage to say, "I found a lump in my breast".....?

His epilepsy

It's his epilepsy. Not mine.

He's the one that seizes. Not me. 

Since he was 3 years and 4 months old, he's been seizing. But we didn't know it was a seizure disorder when it first started.

At first, I was the only one who saw it. Randy didn't see it. I thought I was going crazy. I know about Munchausen syndrome by proxy. Was I going crazy? Is this what it means to be a mom?

But then Randy saw it. He saw Nathan's eyes flit rapidly from side to side! Hooray! I'm not going crazy!

Then a close friend saw it. Woohoo! We're not going crazy! Someone else can verify!

Then more friends saw it. Because it kept happening. And nothing could stop it.

So we went to our doc. Again. He ordered tests. Hearing. Vision. Both were normal. Hooray! My kid can see and hear!

We got a referral for a pediatric occupational therapist. But only because he was struggling with fine motor skills.

We started occupational therapy. The closest pediatric OT at the time was in Poulsbo. So each Wednesday, I'd load both of the boys up, ages 3 and 6 months, and we'd drive to Poulsbo. For nearly a year, every week, we'd be in the truck. Drive for over an hour. Treatment for 50 minutes. Drive back home.

But his eyes were still flitting rapidly from side to side. I later learned the correct medical term is nystagmus. and that it mostly happens in people who are blind.

At Nathan's 4-year well-child check-up, I pushed. His eyes were still flitting, I was scared and emotional, and nobody could figure out what was wrong with my kid.

We ended up with a referral to Mary Bridge Children's Hospital in Tacoma to see a pediatric neurologist. Getting Nathan on a ferry wasn't an option because there's way too much going on.

Get in line. Buy the ticket. Make sure you arrive early. No you can't get out right now, we're getting ready to drive onto the boat. Yes, let's get out and go use the bathroom. Yes, you can play on the huge video arcade machine. The captain said it's time to get back in the truck, Nathan. We need to follow the rules, Nathan. The rule on the ferry is we need to go when the captain says it's time to go, Nathan.

And I pick him up, kicking and screaming, carrying him all the way down the stair, both of us crying, and then he fights to get out. Have you ever had to body slam a small child into his car seat? I have. It's not fun. Transitions suck.

And if we're gonna drive, we may as well stop in Tacoma instead of going all the way to Seattle. Right? Why set myself up--and set him up--to fail by getting on the ferry? Nope. Load up. We're driving.

October 2010, the pediatric neurologist at Mary Bridge, who always wore 4" heels, ordered an EEG at our office visit. I advocated for the EEG to be done at that visit, since we were a 2-1/2 hour car ride away from home...it takes a lot for me to get him there...and I have an 18-month-old toddler.

Sure. Let's get that EEG done.

Thank you.

I'll call you with the results, she said.

We said our good byes to the pediatric neurologist, knowing I'd talk to her soon. 

We did the EEG. I kept him occupied with the iPad. They glued twenty-something electrodes to his head.

His eyes flitted one time, near the end of the test. 

"DID YOU SEE THAT?? DID YOU GET IT!?!? THAT'S WHAT'S BEEN HAPPENING!!!" I screamed to the tech. 

The tech came back in the room and said, "the doctor wants to see you again."

Shit. Are we spending the night? Where will we stay? Is she checking him in? I need to call Randy. 

We went back upstairs to her office. She gave me the news. "Nathan has seizure disorder. See on his EEG right here? Where the lines wiggle? That's a seizure." She pointed to her computer monitor. Lines. Lots and lots of lines that I couldn't understand. But I saw a huge jagged peak and a valley that, based on the time across the top, and the corresponding video she showed me, lasted 1.5 seconds.

She wrote a script. He started taking Depakote. Life started to revolve around his medication schedule.

She also covered her ass. We live in a litigious society, so it makes sense. I get it. I don't fault her.

Let me paraphrase....

"Don't let him swim by himself. Don't leave him alone in the bathtub. He could seize and drown. When he swings on that brand new custom playset you just constructed in your backyard 6 months ago, you need to make sure he's wearing a helmet and that he's buckled in. Don't let him climb the rockwall unless he's helmeted and secured in a harness. If he seizes, he will fall and break his neck. He won't die from the seizure; he'll die from the impact of the fall and he'll likely break his neck. No sleep overs at anyone's house ever because kids stay up late and get up early. Not sleeping enough will cause seizures. You need to keep him as calm as possible at all times. We know that stress causes seizures. And we want to try to minimize the seizures, of course."

Of course. Minimize the seizures. How do I give him the medication? He can't swallow pills. He's only 4.

You need to break the capsules open, then sprinkle the medication into applesauce or pudding. What does he like?

He likes ice cream.

Ok, then sprinkle the medication into his ice cream. 

Ok. Thank you. Goodbye.

Make sure you stop at the front desk and make an appointment in 3 months. We need to keep a close eye on him, she said.

Ok. Thank you. 

Wait. What? Belt him in? Helmet? Harness?

Fuck that. He needs to be a little boy. We did our homework and we have 4 inches of rubber mulch at the high spots on our swing set.

Not that I want him to fall. Not that I want him to get hurt. Not that I want him to break his neck.


But he was a little boy before he was diagnosed with epilepsy. So I'll take the reasonable risk and let him be a little boy.

Let him play.


Hug him.

Love him.

Because I know that at any minute, he could have a seizure so bad that it fries his brain to a crisp and he'll be a vegetable for the rest of his life.

And my regret would be not letting him play; not letting him be a little boy. My regret would be putting him in a bubble; protecting him from himself.

So, today, I express gratitude that he is able to play. 

Note to self

First take off shirt, then apply doctor recommended lotion to breast receiving radiation therapy.

Otherwise it's difficult and messy.

And kinda funny...but kinda not.....

It's not like I'm a newbie.

I've had 8 radiation treatments so far. Only 13 more to go. 

Gratitude, 1/2/15

Today I express deep gratitude to Scientists.

Specifically, the Physicists. 

I'll start with Wilhelm Conrad Roentgen, who in 1895, first produced and detected what we know today as an X-ray. He was so awesome that he won the Nobel Prize in Physics in 1901.

I also express gratitude to Leopold Freund and Eduard Schiff, who are credited with first suggesting that X-rays be used as a treatment for disease.

Then, in 1896, Emil Grubbe built the first X-ray machine, and started zapping cancer cells. And then Grubbe taught a ton of docs how to treat cancer by using radiation.

Good thing, too, because Dr. Grubbe ended up dying of cancer of the intestine in 1960.

Wikipedia told me all this.

After I Googled it "history of radiation treatment for cancer".

Anyway, if it wasn't for these physicists, health care would likely be in a different place.

So, thank you, physicists, for getting the idea, building the machine, and moving technology forward.

And for saving lives.

Especially mine.

Gratitude, 1/1/15

This month, the most important month of the year because it's the month I was born, I will do my best to express gratitude each day.

Not because Facebook says I have to.

Not because it's the month of Thanksgiving.

But because I get to express gratitude.

Today I am thankful for Randy, Nathan, Isaac, and Abby. My family is everything to me.

Except for right now, because I need to go check on Nathan. He's in the bathtub, calling for me....

Can't a girl catch a break?

Box Tops & Labels

I feel so much pressure from Box Tops for Education.


And Labels for Education. 


I don't feel the pressure from anyone in particular.

It's totally all on my head.

Isaac goes to public school. He's in the first grade. The teacher doesn't call me out on my lack of participation. She's cool like that.

His kindergarten teacher never called me out either. She was cool. I mean, she had a group of 17 6-year-olds that she chooses to spend her day with. By default, kindergarten teachers are Super Heroes.


When Nathan was in public school, I didn't feel participation pressure from his Special Education teacher. She was cool like that. 

But the pressure is there.

It's real.

Why?

Why do we have to use labels to raise money for schools?

Oh. Right. Our priorities as a country are totally messed up.

It's more important to wage wars for oil than it is for children to have the best computers, the best most scientifically accurate textbooks, the awesome playground equipment, the best knowledge, the best opportunity. 

Someone, somewhere came up with the brilliant idea to sell flour and soup, and a portion of that would raise money for schools. It's a win-win, right? You eat "healthy" foods, the companies make money, they look good--bc who doesn't look good when they're helping kids? Right? And then, it only takes a minute to cut out and paste the Box Top or Label onto the sheet.

Win-win, right?

No. No it isn't.

It puts pressure on parents to buy the "right" items; to make sure the Box Tops and Labels get on the sheet, which is downloadable from the web, by the way. Just in case it gets lost with the pile of papers that come home every couple of days.

But you know what? I'm trying to get through my life, which is all about cancer right now. Oh! And I'm a homeschool mom to a special needs boy. And I'm a college professor that teaches an on-line Health class. And I have a 6-1/2 year-old boy. And a husband. And a dog. And aging parents who live 1,800 miles away. And my amazingly supportive friends.  

Box Tops and Labels get dropped. I have enough on my plate.

It's not that it's not important.

It's that it's not important to me right now.

Maybe someday I'll get my shenanigans together enough to get a sheet of Box Tops and/or Labels in to the school.

But today isn't that day. 

And, when I made chocolate chip cookies this past weekend, and opened a new package of flour, I was secretly disappointed that there wasn't a Box Top on the package.

For reals.