Okay, this is complicated. The good news is that I tested positive for the EGFR genetic mutation. “Huh,” you might be asking yourself. “How is that good news?” Well let me tell you. I’ve learned a lot in the last cou
ple of weeks.
In the last five years or
so, there are certain drugs that target certain genetic problems in cancer that seem to work for years. In some cases, up to nine years (which is as long as the drug has been out). So this is not chemo. This is not radiation. This is not immunotherapy. This is a drug named Tarceva (http://www.tarceva.com/patient/) that targets (as I understand it) my PARTICULAR genetic mutation on a genetic molecular level. It’s equivalent to putting a cork in my “genes gone wild” cells, which have been spewing out a bazillion cells that are causing the tumors.
So I’ve been on the drug for two weeks. They tested me on Friday, looking for trouble (like my body’s not agreeing with this drug) but they found NO problems whatsoever. Everything seems to be hunkydory!
I’m not supposed to see results for a month (or two, or three). BUT, as you know, the cancer is in my spine, cracking the vertebrae. I went from not being able to pick up a fork and being in a LOT of pain to being able to dress myself and eat by myself and even sit in a chair without ANY pain (granted, I have to sit in a recliner because of my cracked vertebrae, but STILL — I’m SITTING!!!) So, our conclusion is that the cancer is moving off of the spine or taking the pressure off, but we don’t know for sure yet.
The good news is that this is LITERALLY a one-pill-a-day solution to Stage IV cancer — which is INSANE.
We really don’t know what to expect. And because the drug is new, no one knows what to expect. Everyone is being very cautious and the doctors in particular are saying, “We’re confident we can push this cancer back. But it’s going to continue to mutate.” The good news is that they can switch me to four different drugs, or any combination of the four. The doctor says they’ve even had good luck switching people BACK to the original drug as the cancer mutates and it STILL seems to be effective.
So that’s the nuts and bolts of the cancer situation as we know it at this moment. Me personally, I’m weaker than I’ve ever been. I’ve lost 34 pounds (and I’m not trying to lose weight). My pleural area gets drained about once a week, and they get out between 650 mL and 2 liters of fluid. When I start to fill up, I start having trouble breathing. During the day, I can control the natural panic that is associated with not being able to breathe. At night, it’s hard. The hardest are the moments between falling asleep and being asleep. I’ll have involuntary panic attacks. I’ll literally fall asleep and jerk awake hundreds of times in a row, literally with each breath. That tires me out. They just gave me anti-anxiety drugs, which I haven’t used yet, but just HAVING them there has helped me to calm down.
I think what I’ve learned is that it’s one thing to be brave in the daytime. It’s another when you’re alone at night and you can’t breathe. I’m grateful for Tajci because she sits with me for as long as it takes. It gives me a lot of respect for people that are struggling through these things, whether it be cancer or something else, alone. Because the fear is real. Even with faith. So maybe think of those people if you wake up in the middle of the night to go to the bathroom. Think of the person who’s afraid and alone and pray for them. For just a few minutes. Just be with them. Even if you don’t know who they are or they’re far away. And if you think of it, be with me too. I’ll be thinking of you!
PLEASE don’t be shy to reach out to us to put us to work! I’m happiest when I’m busy.