Levels

Thanks to the boys playing Angry Birds since a young age, we live with Levels.

This works really well for us because we're a family living with autism. Life can be complex for anyone, but when you're dealing with autism and epilepsy and cancer, living with Levels helps keep life a little bit simplified. 

Nathan has two Levels of medication everyday; once in the morning and once before bed for seizure control. For the most part the meds help, but he still has 20-40 seizures throughout the day, lasting from 1-3 seconds each. It depends on his Activity Level, the day before and how much sleep he's had, or if he's sick, how much screen time he's had, how much school work he's done. And when the Holiday Level hits, look out, because he seizes a LOT. If he doesn't sleep well, or is sick, the number of seizures he has during the day increases.  

Levels work with food, too. Sometimes Nathan eats Two Levels of breakfast, a couple hours apart. Isaac frequently has Two Levels of pasta or pizza or goldfish crackers. Fortunately I can negotiate a Level of Protein and/or a Level of Fruit or Veggies in between Levels of Carbs. 

Seriously. This is how we roll. Oh and when you reach The Boss Level, it means you're at the Highest Level. Or that you have a full tummy.

When I was going through my first round of chemo, Nathan dubbed it Level One Chemo. I'd go to the Cancer Center on Monday morning at 7:30 for labs. At 8:30, I saw my doc, and if my labs were ok, she'd approve me for treatment, which usually started at 9:30. I was given a two-drug combination that was delivered into my port, and by Wednesday morning, the medication knocked me flat on my back, confining me to my bed for two to three days.

I was was religious about taking my prescription anti-nausea meds, and taking the RSO medical marijuana capsules that Nurse Wendy made for me; I was so happy that I never puked. But a couple days after treatment, my Energy Level was Zero. I was exhausted all the time. Fortunately I only had four doses of Level One Chemo, and went every other week over the course of 8 weeks.

Level Two Chemo was a different medication and was delivered the same way as as Level One Chemo, a liquid that went into my port, and through the port directly into my heart. I started Level Two Chemo the last week in June, and was supposed to get 12 doses, once a week for 12 weeks. 

Seemed easy enough. 

But that didn't happen. After my third dose, I started having what the medical community calls "urgency issues" which translates to "sudden feeling that if I didn't get to the nearest toilet, I was gonna shit my pants!" It was about this time my friend Carrie and I stopped walking on the Waterfront Trail on Saturday mornings; and that was hard for me.

I had a total of 6 treatments of Level Two Chemo before winding up in the ER on a Saturday night with a severe case of chemotherapy induced colitis. Yes, the ER Level is a Really Serious Level. Fortunately, the boys have each been to the ER, so they know it's the A.F.A. Level--the Ain't Fooling Around Level. 

Apparently chemo induced colitis is a side effect that is very rare, so of course I developed it. It basically felt like I was giving birth out of my ass. At one point, as I was doubled over on the toilet, I told my husband I'd rather give birth again. But then we'd have another baby; not happening.

The concern Randy and I had was that I had an intestinal blockage; but the X-Ray showed I was completely empty. I didn't feel like eating anything, and had no energy. All I could do was lay in bed and sleep. Oh and I could walk to the bathroom. And I could smoke a lot of marijuana, because it helped me sleep, and really helped my Anxiety Level low.

Level Three Chemo started when my medical oncologist and I agreed that the Level Two Chemo was not a good medication for me. She chose another drug, of which I'd receive two doses, three weeks apart. 

I had to do an experiment and was horrified to do so. The Level Two Chemo drug was called Taxol. The Level Three Chemo drug was called Taxotere, and was chemically similar to the Level Two Chemo drug. We discussed possible side effects, but here's the thing with chemo--the list of possible side effects is several pages long, and nobody knows how they're going to react to the drugs. Fucking cancer. The only thing for sure is you'll feel like shit a couple of days later.

You also know the other side effects you're gonna have for sure are anxiety and not sleeping the night before you go because you're so fucking scared you're gonna keep feeling like you're going to give birth out of your ass after they give you the new drug. 

My Anxiety Level was at an 11. 

The Boss Level. 

But you suck it up and you drive yourself to the Cancer Center and you take a few hits off your pen to calm your nerves, but only after you park your truck because the last goddamned thing you need is a ticket for DUI or even to get arrested for failing to follow the open container law, risking your family and your career. 

Do they give inmates chemo? I'm too cute to be in jail! 

And you start envisioning the headlines on the local paper of your small town: "College Health Professor arrested for Medical Marijuana DUI: claims she has breast cancer". And even though marijuana has been medically legal in Washington since 1998 and recreationally since 2013 (passed by us voters in Nov 2012), you still freak out a little bit because your a child of the 80's...where you had the Reagan Administration telling you to "Just Say No" and Nike telling you to "Just Do It". 

Those two mass media campaigns are totally responsible for fucking up Gen-Xers. Seriously. Can you say "Mixed Messages"?

So, just like before when you did Chemo Levels One and Two, you toke up before you walk in for your Level Three Chemo because you gotta get through this shit. Fucking cancer. You have to crack the windows both for the smoke, and for the anxiety can escape. That energy has to go somewhere, because you're beyond the Boss Level. 

Taking medical marijuana helps you relax. Helps you maintain your sense of humor. Helps you feel like you can accept the toxin they are putting in you that you know is killing your cancer. 

As you sit there, knowing you'll be completely sober when you leave the Cancer Center four hours later, around 11:30 am, you wonder when the United States will get their shenanigans together, declassify the medication as a Schedule I Substance and let people have access. Because you know that it's not anywhere near the same as heroin and LSD. You feel intrinsically that you've been lied to by the Fed. By the D.A.R.E. program. By the textbooks that you studied in undergrad. You can't overdose on pot. You can overdose on heroin. 

And you're pissed that your Father-in-Law didn't get the same opportunity with medical marijuana that you have. Because he lived in Oklahoma, where if you have any--ANY--amount of pot on you, you're in jail for life. Period. No questions.  

And you get through the first dose of Level Three Chemo. And you wait for days, expecting to get knocked flat on your back, because that happened before and the two medications are so similar, chemically.

But it doesn't come. You passed the first part of Level Three Chemo.

And you go back three weeks later for the second dose of Level Three Chemo. And you wait for it to knock you on your ass again, even though your medical oncologist, with whom you've developed a good relationship, and you trust with your life, obviously, told you that if the first dose didn't give you colitis, the second dose won't. 

But, you're so fucking scared and strung out from living with cancer and your nerves are fried because of everything you've been through, you don't completely trust her when she tells you you'll be ok.

But you take it.

And you pass Level Three Chemo.

And you recognize that you just finished the game.

All Chemo Levels Complete.

You Saved the Princess. 

And you're thankful for being done with The Chemo Levels. 

November 19, 2015

Wow. Thursday was amazing.

I am so thankful. And so fortunate. 

I am very loved. 

By a LOT of people! I mean--WOW! I am truly overwhelmed.

It was the type of day that will stand out for a long time. Like your wedding day. Or the days your children were born.

Unless you have like 15 kids, then you'd probably mix that shit up, right?

My day started at 5:05 am, when I heard and felt Randy get out of bed to go help Nathan. Fortunately Nathan got back to sleep, but was borderline-meltdown because his stomach was empty like a Sarlacc Pit when he got outta bed about 7, insistent that his brother play a round of Candy Land. Seriously, the kid could've eaten Boba Fett and still needed more food.

Isaac's got a lot going on, getting ready to leave the house by 7:25. But he stopped and played Candy Land, because that's the type of brother he is. And so did Randy, because that's the type of dad he is. There was just enough time before they left for school and work. Abby played too. But it's hard for her because she doesn't have opposable thumbs. Isaac won. No meltdown occurred. Gratitude. 

Nathan and I played Connect 4. Fine motor skills. Planning. Strategy. He's working on these pieces. Monopoly Jr. was next. Counting the number of correct spaces. Counting money. Adding. Subtracting. Basic reading. He's getting it. But lots of colors on both games can cause stress for him. We had a strong snack before leaving the house. Always have a strong snack before you go workout with Mrs. Ventura. Always.

We walked into the dojo for Hapkido, and when I opened the door, Meghan, Vanessa, and Emily greeted me with gusto! YES! Thank you ladies! As I was helping Nathan into his dobok, I breathed with you--and needed it. Gratitude.

I got to spend about 40 minutes talking to my Mom-in-law, Uncle Jerry & Granny. On the actual phone. Because, really, the only time I use the talkie part on my phone is for medical appointments. Right? It was fantastic to talk with them. I drove out to Ediz Hook and watched the waves roll in on the north side of the spit. It was grey in Port Angeles, and the sun was shining on Victoria, BC and it was beautiful. I stayed in my truck, where it was warm, just talking with them. Sometimes, you just gotta hear your Momma's voice, you know...?

I picked N up from Hapkido, where he lead the class in stretches for the first time! So proud of him! Thank you Mrs. V for the picture! This is what autism can look like. This helps me feel like we're all doing something right for Nathan; creating a supportive community for him.

We ran several errands after class. A year ago, I would even think about taking Nathan to one store, let alone 3, AFTER all the action at Hapkido, and AFTER playing board games. He impressed me. I knew I was pushing my luck though, and we headed home. He was starving again, and I didn't have any food that he was willing to eat.

He was starving and needed me to help him not have a meltdown. I parked him on the couch, with both of his weighted blankets--totaling about 25 lbs--and gave him the TV and Roku remotes. He watched mellow shows, as agreed upon--he was still pretty reasonable--but was super on edge. He expended an incredible amount of energy; I could feel him teetering on the edge of a very dark and very deep precipice. I knew he could go into meltdown mode if I didn't hurry and make something substantial for lunch. He ate a full plate of fried chicken nachos with avocado (not my tastebuds) and was pretty darn happy after that.

When Randy and Isaac came home, I was amazed when I's handed me a stack of cards--he told his teacher and classmates that it was my birthday AND last day of radiation. Mrs. L took time out of her day and her lesson plans and rolled with my kid and his excitement and they made cards for me! So honored. So thankful. Plain white printer paper folded in half make the best cards ever. The kids drew super heroes and lasers, hearts and flowers and rainbows. And the kid spelling--telling me I'm a sooper heero! Love it! Gratitude for Mrs. L and for the kids that are helping Isaac during our family Cancer Adventure. 

I left for my last radiation treatment, carrying a dozen cupcakes that Nathan and I made Wednesday. It was a homeschool project for us--reading the instructions that Betty Crocker kindly provided on the box. Measuring = math. Pouring = fine motor skills. Using the electric hand mixer AND moving the bowl around = using both sides of his brain simultaneously. Baking = chemistry. Using the oven properly = kitchen safety. He'll get there. He's not the Pokey Little Puppy. He's Leo the Late Bloomer. And it's ok.

I walked in the two sets of the sliding glass double doors and was totally surprised by what greeted me--a bouquet of balloons, a cupcake, and 2 cards! So thankful to Jen and Caitlin for stopping at the Cancer Center and dropping gifts for me. So thankful for Robin and Tess at the front desk and the birthday card. They were all thrilled with the cupcakes--because they have the type of job where people are not happy, and people are dealing with terminal illness, and energy levels can be quickly affected. I'm not sure they are thanked enough. So the cupcakes were my way of saying thank you for helping me. Rob, my favorite radiation tech, insisted on taking my picture. He said that in 20 years, I'll want to remember this point in time and that I needed a picture of me. I'm glad he insisted; I'm glad I listened. 

I stopped by to see Lynn the Radiation Oncology Nurse who also happens to be a Rock Star. I gave her a cupcake and gave her a hug. I thanked her for her dedication to her patients, and to me. We both got teary and promised to keep in touch.

I stopped by to see Florence--she was my Other Mother through My Cancer Adventure. My own mother was unable to come up; I get it...a flight from Tucson to Seattle, then a drive to Port Angeles is a big deal...and my folks are getting older. But Florence went to most of my chemo infusions with me, and brought fancy chocolate for after treatment was done. Twist my arm to eat chocolate! And, at her house on Thursday, she gave me some fancy chocolate, and a beautiful orchid in a vase. She's been a gardener for 40+ years and disclosed she's killed many orchids. I promised I would do my best to keep it alive. Typically I have a black thumb of death.

A quick drive back to Port Angeles because I also got to go to acupuncture; this has been an important piece of my cancer care. Pat has been fantastically supportive and explained every thing she did when she was inserting needles. For the most part, I don't feel the needles when they go in. Sometimes I do, but it's like a pinch and then it's gone. Ain't no big thing. Then I rested for 40 minutes--it was much needed. I did't go last week to acupuncture because Pat was sick; as a health care provider, she doesn't want to expose others--and for that I am so thankful. But last week was rough; and I'm thankful it's over.

And then I brought home Chinese food and used a gift certificate we were given--thank you whoever gave that to us back in the summer. I appreciate the birthday dinner! The leftovers fed us grown-ups again Friday night. Nathan had fried chicken nachos; I's ate pasta. I'm a short order cook a lot. But it's important for the Routine. Whatever, just eat, bitches. 

I also spoke with my folks Thursday night. I worry about them more than they know. Mostly I worry about Mom (mostly....) And while it was good to hear their voices, I know that I'm going to have to talk with my Dad at some point. Although I've not seen my folks in over 8 years, I can tell my Mom is starting to show signs of slipping. My Dad is planning to retire in about 6 months when he turns 65. He's been talking about retiring for the past three years, so we'll see what happens in May. He's probably already aware of Mom's mental health status; but we still gotta talk. It's not going to be easy; and I'll do it when I'm ready, when I'm feeling stronger. I'm the oldest; I'm the Health Educator and it's a major health issue; I discuss this topic with my students, and so it falls to me. 

I texted with my brother yesterday, too. I am thankful for him. He sent a card and a Wonder Woman magnet and told me about the gift certificate at Michael's. Randy and I are going there on tonight for dinner. We need a break and an evening out.

After Chinese food, Rand and the boys sang "Happy Birthday" and I blew out the candle on my cupcake. We each had 1/2 a cupcake, because nobody needs that much sugar before bed. Even though we ate late, the boys were still in bed asleep at their normal time: 7:30 pm. 

It's hard to pick a favorite thing about Thursday November 19, 2015, the day I turned 43 and am considered young according to my oncology team. The sun was out most of the day--that was a huge bonus! But a favorite--I'm not sure I have one. I'm quite pleased with myself in that I averted TWO meltdowns with Nathan. But really, I am thankful for the entire day: for the love and support of my husband and my children; for my friends who I've chosen to be my family; and for walking out of the Cancer Center as a Breast Cancer Survivor.