Wednesday, November 25, 2015


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. 

1 comment:

  1. Wow! As always, completely captivating. You rock, of course.