I’ll just jump right in.
So an update on our heroine. The radiation went well. They planted the seeds in the left lobe of the liver and there was a small artery about the size of an eyelash they squeezed it into. We’ll wait for four weeks then do an MRI to see what’s doing then schedule for the right side of the liver. What they dont tell you is about the antibiotics they prescribe. You’re supposed to start them two days prior to radiation. We started them on saturday and by saturday afternoon the downward spiral began. Nausea, sweats, chills, fatigue, and generally feeling like poo. So we went for the radiation. Even the doctor said yeah, that’s a tough one but you need to have it. Swell. So after four days of hell we wound up with a trip to the ER (which is where I’m writing from now). Every doctor/nurse we’ve told about this medication (Flagyl) bristles at the mention of it. At least three have had it and said, oooooh, yeah, I had problems with that. The last doctor said her mouth started to water like she was going to throw up at the mere mention of it. So, they are changing up the meds to something else with a name so long it sounded like he was making it up on the spot, just combining names of different drugs because he just forgot the real name. It’s what I would do. I just heard it again, amoxifloxincillin. Still sounds like something Dr Seuss would prescribe but either way, we’re done with the other stuff. So we’ll see.
Now for a little housecleaning. Ham and cheese are doing great. Both have been supported by their friends and are in good spirits all things considering. Both girls have been blanketed by friends old and new and while we’d like to protect them, because they’re our kids, watching them grow up knowing all this is around them is pretty cool. Well, cool in the fact they’re strong people, not just kids. You know, the kind of people that when I grow up I want to be like. Hannah received a scholarship for two years at FSCJ where she’ll be going in the fall, so yay her. They both are great kids and really I honestly, truthfully, couldn’t ask for anything more. We also are speaking with a friend (Al Emerick, a sweetheart of a guy, if you’re in Jax you’ve seen him on the Kia commercials. He’s bald, with a beard. Reminds me of a striking young man I look at in the mirror every day) about some family value mapping/counseling. I think that will do us some good. The counciling we’re getting here, while I’m sure he’s a fine dude, just ain’t really working (the last time we were in, I think the advice was “just keep doing what you’re doing”. Thanks. My fortune cookie said something similar the other night). Also the outpouring of support from the last blog has been overwhelming. From good friends and family surrounding us to people I’ve never (and probably will never) meet its truly one of those things that has changed my way of thinking. We’re not giving up. This is still an uphill battle. We’re going to talk with our doctors about maybe some alternate/second avenues (clinical trials) or just to see who else they’ve spoken with to exhaust all our options. I spoke with a doctor from Vermont, a sister of the director of Haley’s production of west side story about this. We owe a lot to Beth Harvey as she’s thrown more greatness at our kids (and our family) than we deserve and our lives have been made a lot easier with her in it. Anyway, her sister gave me some advice on how to handle some of this going forward as far as medically. Not that we’re dissatisfied with the quality of care, but when the clock is ticking, and you have the dice in your hand, might as well throw a few rounds right? A post from one friend at the beginning of this spoke volumes to me. “This is not how this love story is supposed to end”. No, no its not and I still have a shred of confidence we’ll still win. And that’s all it takes right? Just a shred.
I’ve also heard a lot about how I should be a writer from people who read this nonsense I’ve thrown out here. This started as a way to keep everyone updated on our heroine and somewhere down the line turned into something else. So I’m going to turn this into a book. “How not to jump off a bridge, a caretakers tale” (I was going to go with a longer title “Tales of wit and wisdom from the side of a hospital bed from a caretakers point of view combined with stories and andectdotes about real feelings and pontifications on life events” but the more I looked it seemed a little wordy). It’s going to be the blog posts with some looking back at what was going on at the time. Hopefully, someone will get something out of it because there are times the doctors look at you as a caretaker like you’re a fly at a barbecue. Which look, I get we aren’t the patient, but sometimes have a lot more idea about what’s going on. So we’ll see where that turns out but thanks for the support again. It’s been a long few days. I’m bushed. Plum tuckered out. Whatever. Anyway, love you guys and blog at you soon.
Post blog action: Elizabeth still feels not well. Think its the radiation. Hope its the radiation. Still dont know how it went from four weeks til symptoms and fatigue come to two weeks to 48 hours. That’s a pretty big window. Nonetheless, feels less than stellar.
Big kiss MUAH!!!!!