So, what do people want to know about me or my situation? What questions are off limits?
Well, let's start with that. Nothing is off limits unless I say something like, "Yeah, like that's any of your damn business". My terms, my limits. If anyone gets put off by a question, I'd say grow some thicker skin. The only way to understand what I'm going through, and what each of us may go through, is to ask. Knowledge is power, and that's no bullshit. For years we heard teachers tell us that there is no stupid question, no matter how trivial a person may think the question sounds in their own head. Ask, be bold. As I say, the worst you'll get is a none of your business answer. I'll answer all of them as honestly as I can. My terms, I get to decide how much detail I go into with each answer. Some will be short because I just don't understand the science. I'm oil field trash, not a doctor. Others will be short because it's something I want to keep for myself. I have to have something that's mine. I dedicated the blog to being open, as open as I can anyway, so people get the chance to learn something. Whether it's how not to be afraid of the future (frankly, none of us get out alive) or just to put a new eye on what's going on around us. I always felt like I was a keen observer of my surroundings. I didn't miss much of the pretty stuff, or the ugly either. But I've also slowed down my looking a bit now, so everything takes on a different tone. I live in some butt ugly country. Not much more than mesquite, caliche, and some scrub grass, but even here has it's moments. Always has had, I just see more of them now. That was my whole point here. To give folk a chance to see what I am, and maybe see it when they aren't so pressed for time. Dying is a piss poor way to discover the nice stuff along the road, believe me. I've also said I'd be open about how I feel as this goes along. I intend to keep that promise, until I just can't any longer. That may be ugly as sin as we steam along here. I intend to put in everything I can, no matter how crappy and bad it gets. That's the point of being honest, sometimes it hurts a little.
Okay, onto a question that popped up yesterday on the Facebook Group site. "You're not doing the Clinical Study even if it might help others?"
That's right, I'm not. I sort of short sheeted that answer yesterday, so I'll try and elaborate on why I came to that conclusion a couple of weeks ago, and how I'd already made up my mind not to do Chemo, before seeing the Oncologist in Midland.
So here goes nothing. Back when I got the biopsy in late October, I'd told my boss that if the cancer came back it was going to be mad and worse than the first time. Being right isn't all it's cracked up to be. I knew then it was going to be a difficult row to hoe, but I was willing to take the risk and see what was going to happen and how we were going to fight it. Lots of surgery, cutting out big chunks of me. That left me, after some of the muscle flap died and required another two surgeries to fix, unable to swallow or speak. Without a pectoral muscle and missing a goodly chunk of one quadricep. I didn't get PT orders in what I consider a timely fashion, so a lot of my upper body weakened out and atrophied. No fun. They collected samples of all the cancerous tissue, plus the dead quad muscle, as well as having every page of doctor files from the previous bout. A lot of information for a research hospital to use. Including growth rate in me, which was awfully fast. Both times it was very fast, and I see no reason this one won't be the same. I have hell with chemo. Bad side effect? Hell yes, dish that shit up because I'll have some, no doubt about it. Any more radiation and that will kill me faster than the cancer. In short, misery and death, right? My surgeon, at our first meeting, told me this was the shot. If it came back after that, there wasn't anything left to do. I figured that, just taking a wild guess at the mechanics of it all, and decided to give it a shot. We kill the cancer this time, it won't have a place to hide. Or so I thought. Cut away, surgeon, let us be done with the foul disease, repair me, and let's all have a big hug to a successful treatment. Almost worked too. Clear for 5 months
So, they find it again on my first reconstructive surgery. I knew by the look on the Doc and his assistants face something was up and it wasn't good. Fine. We'll see. A week later I see my new surgeon, he mentions Palliative care, throws my loving wife into tears. Bad. He and I discuss probable time. He says about a year, goes into a bit of what to look forward to (that's a taboo question, I will not answer that at all) and hooks me up with the MDA folks for the next week, along with a chemo consult. We'd already discussed that it wasn't a cure, just an extension, so I was leaning toward no chemo then. After another 2 weeks, and the palliative care consult (the doctor was very cute, and tiny) we had a chemo consult. You notice I keep saying "we". That's the wife and I, she's in this with me.
MDA chemo Doc tells me the protocol they want to use is going to be very strong, but I'm strong enough to stand it. I ask cure, she says no...Strike on. She brings up Clinical Study, a bit shy on details other than it's going to be way stronger and more harsh than the chemo treatment. Cure? Nope, just to see how my cancer reacts to the treatment. Sooooooo, really, really sick and miserable for zero gain on the whip end. I told her "NO" right away. I say I'll think about on cycle of chemo, if I can do it at home where I can be comfortable.
Fast forward to Midland one week. I'm in wanting to see if MDA has set up the protocol with my doctor. The orders came in while I was waiting. They take some blood, go over the CT report that came with the orders and ask if I can wait to see the doc. Thirty minutes or so later he's telling me about the treatment, it sounds bad to me already. I ask if my wife can come in and hear what he has to say the next day. I've already made my mind up, but Liz deserves to hear what I heard, so she can understand why I said no to the Chemo. She listens, cries a bit, and agrees with me. No chemo. I know this makes her weepy and stuff all day, and I hate that. For me, it's like lifting a bus off my shoulders. Hearing there wasn't a cure was like having a tank taken off, this was the last big weight and I was glad to be free of it.
So, here's why no clinical study and no chemo. They've got chunks of me that I signed off for them to have and study. They have dozens of blood tests, CT's and PET scans to go over. They have growth rate. The only thing they don't have is me as a guinea pig.
My life on my terms, my death on my terms. I've chosen quality over quantity. Without being able to speak will or swallow, or train to throw, or really ride the bike, my quality of life isn't what it once was. Fine, I accept that as part of the war I am continuing to put up against that which will kill my body. And I figure faster than within a year. MD Anderson is a great hospital, and they do wonderful work in curing cancer. If surgery hadn't been part of the equation, I'd jumped on a Clinical Trial so fast it'd make your head spin. As things stand now, no way, no how. I'm still doing speech swallow therapy, so hopefully I'll be more readily understood when the time comes I can't speak at all. I do lymphedema therapy, because that helps everything else as well as my comfort level.
So now there's a bit better explanation, I needed the extra room Facebook can give, but not as well as this forum. So, ask away. I'm open. And as I've said, if the questions make you woozy or upset, put that extra layer of skin on. Hell, I'm the one being asked, no one else is
