yesterday at the hospital...

(every eight weeks I have an IV infusion of Remicade, a drug that suppresses my immune system, so that my immune system is busy with the Remicade instead of attacking my digestive tract. Crohn's is a fun disease. I wrote this yesterday while at the hospital.)

They have weird hospital beds at the APU/GI clinic here. When you move, they adjust, meaning that you shift slightly and suddenly the bed springs to life, emptying some air bladders and filling others under you. It's a little disconcerting at first and is really pretty comfortable if you are laying down, not so great if you are sitting up. When I first get there and I am sitting on the edge of the bed while they take my blood pressure and stuff, it seems I always manage to sit on the edge of a bladder so I am canted sideways.

Getting my Remicade in a hospital is always takes forever. Once in the solution in the IV bag, Remicade has a limited shelf life. And it's expensive. Somewhere around $3000 each time for my dosage. Nobody wants to dump $3000 worth of drugs down the drain, so they have to see the whites of your eyes before they will even consider prepping it.

(And for everything the military gets wrong, they have finally gotten it right for family member health care. I have been hospitalized twice in the last three or four years, had a dozen tests and procedures, had two sleep studies, gotten tens of thousands of dollars worth of drugs and medicines, and I have paid $6 for co-pays at a civilian pharmacy.)

And since it is being prepped in a hospital pharmacy, they get to it when they get to it. The medical facility on Elmendorf is a clinic and a hospital and I think something VA, and they serve both Fort Rich and Elmendorf and all the retirees who live around here. Which means the pharmacy is not full of people just sitting around waiting for me to show up so they can have the honor of mixing up my drug. Dang it. Instead the pharmacy is full of people inconsiderately filling prescriptions for all the lesser mortals. Usually it takes at least an hour and a half to get the Remicade delivered. I am very careful to take a book along and my journal, so that I have something to do. I guess I could watch TV, but daytime TV sucks. And they have free piles of the Anchorage Daily News around, but I can usually read the whole thing, even the sports section, in less than twenty minutes. The Wall Street Journal it is not.

When the Remicade finally shows up, they give me a shot of Benedryl first. Woo. I can literally feel the Benedryl hit my brain about a minute after the nurse injects it. I get light-headed and can barely stay awake. Remicade is made with a mouse molecule, which is kind of creepy. (I really liked cheese before I started the Remicade, I do not sleep in a pile of shredded kleenex, and I do not twitch my nose alot. Thank you for asking.) The Benedryl will hopefully counteract any mild allergic reactions. I personally have had no reactions at all to the Remicade, except for the really good ones like my immune system no longer shreds the inside of my large intestine and I don't feel like I have the joints of an eighty-eight year old woman.

The Bendryl ensures I fall asleep at least briefly, although the fact that they check my blood pressure about six times means it's not a long nap. And since the infusion takes two hours, the Benedryl wears off before I drive home.

Even in Tucson, though, I would get cold, sitting there doing nothing for several hours. It was one of the few times I was happy to step out into that horrible (but dry) heat of the Tucson summer. Going out to the Suburban which has been sitting in the parking lot for four hours, not so great. Especially when I forget to grab some gloves...that's the downside of a heated garage. You can wear a sweatshirt and jeans and be perfectly comfortable when leaving home, not bothering with the parka and the gloves and the hat, because the inside of the vehicle is warm and in the garage.

Then you leave it in a parking lot for a while...and you remember why you have gloves and a hat and a parka. But while the A/C in the Suburban is worthless, the heater is great. It warms up fast and hot.

I think my veins are getting better or I am drinking more fluids or something, because she started the IV on the first try this time. That hasn't been happening very often in the last couple of years, but lately it has taken fewer sticks to get it going. Again, woo. Being an IV pin cushion is not my favorite thing.

But getting a couple sticks is so not a big deal if it means I get my drug. Because life on Remicade is much much better than life without...

Routine tests

Those routine tests last week that turned into a call back for more testing...

I had the more testing this morning. Turns out everything is swell. I will get a letter in a couple weeks telling me everything is fine, and no further action needs to happen.

Which is great! I am so relieved that I am not going to add yet another drug or test or procedure to my already too big list of them.

I will, however, have to have this particular routine test more often than regular people do.

So, it seems that I am taking after my Dad, who we call the 1% guy, since with any procedure, any surgery, any treatment, any drug, he seems to be in the tiny percentage who have some weird or funky or bad reaction or unexpected result.

Makes life more interesting, I guess.

Ironic...And waaaay TMI. I suggest you don't read it.

You're reading it. I wash my hands of it being TMI. You were warned...

Yesterday I willingly ate a radioactive sandwich.

Yesterday afternoon it suddenly occurred to me that I take 6 pills a day to reduce my chances of getting colon cancer -- people with Crohn's have a much higher risk of getting it, I guess because instead of smooth healthy happy shiny cells lining our intestinal tracts we have cranky irritable damaged ucky cells lining our intestinal tracts, and those suckers are much more likely to go mutant.

(Yeah. I have a truly scientific mind, no?)

So suddenly it occurs to me that I have radioactive poo working it's way down my colon. And in my truly scientific mind, radioactive egg + cranky colon = cancer.

Not really. I know it was a very weakly radioactive bit of egg, and that the risks of this test are small.

But in my non-rational part of the brain, I am thinking "I need to poo. I need to poo."

And true to my uncooperative digestive tract, I didn't have to poo. Not as soon as I would have liked, at least.

Good news, though, the new anti-nausea drug seems to work, without sedating the hell out of me. Woot!

Radioactive Egg Sandwich done!

Tedious, mostly. I had to eat a sandwich made from microwaved and radioactive egg white and dry toast, with half a glass of water. It was a little hard to swallow, since it was pretty dang dry. Because they need a solids study, not a liquids study. Apparently we don't care how fast my gut processes liquids.

Then I had to lay still for 90 minutes while the machine that was 4 inches from my nose watched that egg travel from my stomach into my small and then large intestines. That was a little unnerving at first, having this big box right over me. I was very grateful it wasn't completely over my face.

I am thinking I do not have a problem with my stomach emptying too slowly, since the sandwich made it to my large intestine in 50 minutes.

(Were I to work in the Nuclear Medicine Element, I would want to have two patients take this test at the same time and place bets on whose sandwich moves through the fastest.)

Laying on my back on a narrow bed without moving for 90 minutes sucks. Things itch, my body doesn't like lying flat without moving so muscles start to hurt. And my sleeves were bugging me -- I had to pull them up to eat the sandwich (don't want to drag your sleeves through your radioactive breakfast) and I forgot to pull them down again. It's a new sweatshirt and they were a little tight around my forearms.

Fortunately I had my IPod, and fortunately I had almost exactly 90 minutes of battery power...I think it would have died in another couple minutes. I listened to a podcast of NPR's Wait Wait Don't Tell Me radio show, which was great but also hard because it's funny and I had to try not to laugh or laugh without moving. (It's a great current events quiz show. Very funny. The podcasts are available on ITunes for free.)

Also, laying on my back is about the only position where I tend not to feel nauseated. So I hardly at all felt like I was going to throw up (nice change from the other time I was in Nuclear Medicine having a scan of my lungs done to make sure I didn't have a pulmonary embolism. That time I threw up in their garbage cans three times, including one time right after I had spent 10 minutes filling my lungs with radioactive dust, so that they had to treat that particular garbage can's contents as radioactive. For a couple of weeks, the hospital had a garbage bag with my radioactive vomit in their lead-lined vault. Woo.)

In a couple weeks I have the ultrasound of my gut. I also have a new drug -- Zofran -- to try for the nausea. I haven't tried it yet -- I didn't want to take one the night before the gastric emptying scan in case it's another one of those drugs that knocks me on my ass. I think I will try it tonight, depending of course on whether or not I am feeling nauseated.

Thus my medical adventures continue...