kirabug’s idea files

Nighthawk is home from the hospital, as of yesterday. He’s still not 100% and we don’t know when he’s going back to work yet, but just having him healthy enough to come home is a great improvement over where we were 2 weeks ago.

We’re both exhausted, but on the mend. I took yesterday and today off to help us get life back in order… and to spend some time with this guy I’ve missed for the past week It’s a good thing I took yesterday off, too, because we thought he’d be discharged from the hospital in the morning and it was mid-afternoon before we were finally free to go. Ah, hospitals.

Anyway, the plan is to get the comic rolling again and stuff, so the period of radio silence should be over. Thank you all for your good wishes and your patience. Here’s a video of Kaylee in a cardboard box as your reward

Sucks: when your husband is sick enough that you have to take an unscheduled trip into Philly to take him to the doctor.
Extra sucks: when you get sideswiped on the Schuylkill Expressway by an inattentive woman’s SUV on the way there and now have to get your car repaired.
Ultimate Suckage: when your finally reach the hospital, they decide your husband needs a “tune up” (run of IVs and therapy and such) to clean all the crap out of his system… starting Tuesday and lasting at least a week in the hospital and at least 21 days of IVs.

Yeah… my life’s going to be chaos for a little while. Expect sporadic updates at best.

But there are still 2 Idiocy comics in the queue for tomorrow and Saturday, so you’ve got that going for you.

This is mostly a link dump so I can come back and find these articles again if I need them.

• Frontline: 5 Capitalist Countries and how they do healthcare – a good roundup, with few details, but a nice starting point.
• Articles in New Yorker Magazine about healthcare – haven’t read these yet but they were recommended to me.
• Newsweek: A science fact check – describes a worldwide “charity” of volunteer scientists and physicians who review treatments and identify whether they’re effective.

And then there’s one of the most useful sites I’ve found on health care and politics so far, Politifact. These folks are taking those things you’re hearing on TV or reading in the paper and fact-checking them. Then, they post the results online with a grade ranging from “true” to “mostly true” to “half true” to “false” to “pants on fire”. They also occasionally check to see if a politician accused of flip-flopping on an issue did.

It’s a particularly good place to find information on who said what and whether it was true, because most of the news I learn about health care right now is third-hand (so-and-so on the radio/tv/whatever that congress said….) and that means that it’s getting blown out of proportion…. and when it’s a lie to begin with, well, it’s no wonder everyone is afraid and confused.

Probably more on this later, but for now I’m just trying to learn everything possible to find out what the hell’s really going on.

So, last Sunday, my mom, basschica, and I walked in the breast cancer 5K in Philadelphia.

This Saturday, basschica and I are walking the Great Strides 10K in Valley Forge for the Cystic Fibrosis Foundation.

You might be a little familiar with CF, because Cole (from the much neglected Night Fugues thread of comics) was born with it. It’s a terrible thing to inflict a person with, even a fictional one, but they say to write what you know. What I know is that my husband also has Cystic Fibrosis, along with CF-related diabetes.

I’m not going to wax poetic on the consequences. The quick version is that this is a life-shortening disease that screws up every cell in your body. The two most obvious results are extreme congestion of the lungs, and disruption of how your pancreas is supposed to work (resulting in an inability to break down food for digestion, and often diabetes.) If you want to read about the effects of CF, read this article (which is about the bell curve in medicine but gives a very good outline of how CF works), or for straight-up facts and statistics the best page on the web is probably this one. And then, of course, there’s The Cystic Fibrosis Foundation website, which has another ton of information.

And if you want to sponsor me for this walk (which, frankly, is more important to me than the breast cancer walk for what by now ought to be obvious reasons) then you can visit this page where you can donate as little or as much as you want. Even if you just throw a dollar or two our way, it’ll help.

So. Nighthawk is scheduled for a radiation treatment in two weeks, which according to all things thyroid cancer means that now he gets to spend two weeks on a low-iodine diet (LID). (Keeping low levels of iodine in the system now will result in what few thyroid cells he’s got left — the ones we’re trying to kill so they don’t get cancerous — getting really really thirsty for the radioactive iodine he’ll get two weeks fron now. Somewhere, one of my dozen-odd grammar teachers just cringed in pain at that sentence structure, but doesn’t know why.)

Anyway, the low-iodine diet means avoiding food high in iodine, only eating small amounts of food low in iodine, and mostly eating iodine-free foods.

Or summed up differently, no dairy, no seafood, no soy, no egg yolks or foods containing egg yolk, no chocolate, no iodized salt, no bread/bakery products because they’re probably fortified and/or contain iodized salt, no prepackaged food because it might contain iodized salt, or red dye number 3.

He can have six ounces of meat a day, pasta that doesn’t contain any of the stuff in the last paragraph (which means semolina or rice noodles, or yolk-free kosher egg noodles, thank you Manischewitz!), up to 4 servings of bread that we make ourselves following low-iodine guidelines, or other grains like oatmeal and similar grainy things or salt-free Matzos (thanks again Manschewitz!), sugar, jam, jelly, honey, soda, tea, beer, wine, fruit joices, and all the fruits and veggies you want as long as you’re not including rhubarb, marachino cherries, rhubarb, or the aforementioned soybeans.

Now, add to that the fact that with his Cystic Fibrosis and Cystic Fibrosis related Diabetes, he’s supposed to maintain a 3000 calorie per day diet (minimum) to maintain weight, and he needs to do it in such a way that he can keep his sugar under control.

Yeah, we’re screwed.

But so far in the last 36 hours I’ve baked cranberry-applesauce muffins, made LID-safe beer bread, and made tomato sauce entirely from scratch that wasn’t absolutely horrible. I’ve learned that my stonewear loaf pan is not yet seasoned to the point that it’s safe to bake bread without some kind of Pam. I’ve learned that a butter knife is not the optimal tool for prying bread out of a stonewear loaf pan. I’ve learned that sugar will cut the acidity from tomato sauce. Sugar, brown sugar, some honey, and gee-that-still-tastes-acidic-to-me more brown sugar might, in fact, be overkill.

And no, neither of us have any idea how much sugar’s in any of this stuff, so the diabetes, yeah, that’s been fun.

But I’m learning to cook…. that’s good, right?

This year, the Children’s Hospital of Philadelphia finally finally finally got involved in Child’s Play and while I don’t honestly expect anyone to give me anything in exchange for this scrawly comic and whine-fest that I host, with the holidays coming and much stuff going on, the best present you-the-reader could give to me would be to give to them.

Why, you ask?

Well, as has been mentioned before, my husband has Cystic Fibrosis. (As does Lila’s husband Cole in the comic. Coincidence?) Nighthawk’s been treated at CHoP. He’s been hospitalized at CHoP. He’s become healthy again within their halls. And he’s been bored senseless in between.

Hospitals look scary when you first get there, especially where emergency rooms and stuff are involved, but really most of the time they are boring. Sometimes you’re so sick you don’t care. Other times, you’re so healthy that you can get up and wander around and make trouble scaring the nurses by drinking apple juice out of the plastic urinal bottles. In between, you’re too tired to get up (or not allowed because of IVs or tests or whatever), and you’ve already seen everything on TV (or can’t afford to have it on) and you filled up your coloring book and you can’t even hang out with the other kids because you’re contagious or they are or maybe they’re too sick to play. And when it’s over the holidays and your folks are strapped for cash because you’re in the hospital and they have to miss work and they have to pay ridiculous co-pays on the insurance and Philly isn’t anywhere close to where you actually live, and gas isn’t cheap, well, it sucks big time.

So if all you do this winter is buy one book, or one video game, or one movie that’s going to keep a bored and sick kid a little happier, well, you’ve done something that looks little but is actually very big.

(And you don’t have to give to CHoP — you could give to any Child’s Play hospital. Or to any other hospital that’s put a wish list up on Amazon. Or just to your local hospital. You know, whatever works for you.)

As for me, I have some money I’ve saved up for charity that I have to go spend now. Thanks!

Monday:
Arrived at the hospital at 7:30. Pre-op started around 9. I read all of Dragonsblood between 7:30 and around 1. It’s worth the read, and is especially good when coupled with an iPod to drown out the soap operas in the waiting room.

(Side tangent:
Seriously, I swear that hospitals ought to be banned from being allowed to show soaps in waiting rooms. It was bad enough that I was subjected to a couple horrible morning shows and a portion of the New York Columbus Day parade when I was in Philadelphia. But it was followed by absolute horrors on the soaps.

• First, lots of bawling from this grown man whose daughter was in a hospital bed for Lord knows what fabricated reason. Also: some woman lost a baby, and I don’t mean she misplaced it.
• Then, the next show takes us into the middle of some dead guy’s funeral. Because what we all really need to see when we’re in the surgery/ICU waiting room, with our own personal levels of drama and trauma to deal with, is a bunch of people mourning with the melodrama dial set on “high”.
• As if that wasn’t enough, the next show started with some guy being drug to his feet by his daughter after having his head all but bashed in by some unknown assailant, and ended with a nice-looking guy who was just trying to ruin someone else’s relationship collapsing on a porch. Sort of like the woman who’d had the stroke, whose kids were sitting a few chairs away from me.
• And then there was Oprah, who felt it necessary to tell me things about the human body I didn’t want to know.

NOT HELPFUL.)

The TV update-you-on-your-spouse-in-surgery thing in the hospital indicated Nighthawk was in recovery (post-op) by 1:15, which coincidentally was just a little before his mom and brother arrived. I popped out of the waiting room just long enough to greet them, get some yogurt, and totally miss Nighthawk’s doctor, who instead called me and let me know everything went incredibly well and he should be placed in a room soon.

By 4:00 we were hearing rumors that there were no beds available, so I finally cornered a nurse who invited me back to Recovery to see Nighthawk. He was understandably grouchy that he’d been counting holes in the ceiling for three hours. Since he wouldn’t waste energy being grouchy if he was in serious trouble, I took that as a good sign.

Nighthawk didn’t get a room until 6:30. It made for a long day, and he hadn’t even met his nurses yet.

On the other hand, once he was finally upstairs everything was great. I cannot say enough positive things about Presbyterian Hospital or the staff that we dealt with. They had a lot to manage, between the thyroid removal, the cystic fibrosis treatments, the diabetes treatments, and the fact that Nighthawk was running about 4 hours later than anyone’d expected just to arrive, but they did a great job of making him comfortable, making sure he had everything that he needed, and setting our expectations for the night. Nighthawk’s nurse even hunted down a recliner for me to sleep in, so I could stay there with him overnight.

Tuesday:
We both caught some frequently-interrupted sleep between the end of Monday Night Football and 6:45, when the first doctor arrived to scope him out (literally) and remove the drain in his neck. After some blood work, a healthy breakfast, another check-in by the docs, and the usual rounds of meds they declared him healthy enough to leave, and he was given his discharge papers before I could even finish my (admittedly late) breakfast.

We were in the car and on the way home by 10:30 yesterday morning. Nighthawk was comfy in his recliner by noon, and I was off fighting with an idiot pharmacy where nobody can count until around 3.

Today:
So how is he? He still hasn’t gotten his whole voice back yet but he hasn’t been in any significant pain the whole time (hasn’t even been on pain meds for most of the last two days) and is in a good mood. He’s still pretty damn tired, which I pretty much expect.

To be clear, having the thyroid removed is not in and of itself a cure for thyroid cancer. There’s still much to be done, including treatments with radioactive iodine and scans and balancing of new medications. Whee. But the first hurdle has been surpassed, and we get a short break before the festivities continue.

And how am I? Relieved. And exhausted. Possibly as exhausted as he is. My day today consisted of calling back various doctors to schedule various follow-up appointments, and then visiting my own doctor for another round of battle-the-sinus-infection. (My in-laws, who had awesomely taken JessieDog for the overnight, also stopped by to return her today.) It’s currently just after 11:00, a time I could easily stay awake past two weeks ago, and I’m barely awake enough to write this post.

Tomorrow I go back to work. Tomorrow night I might get working on Saturday’s comic. With luck everything goes back to on schedule from this point forward.

Every day is a new adventure. This week has been a set of adventures I’m glad to say I had overestimated. Thanks to everyone who’d sent their prayers, positive vibes, or whatever, in our general direction.