Thursday May 10, 2007 9:39 PM

On Tuesday Jim had his barium swallow study. He's cleared now for viscous liquids and foods like Ensure, Boost, milk, pudding, yogurt...stuff like that. They gave him a cookie coated with barium to try (that must have been disgusting) but the cookie got stuck in this area behind the pharynx. I'm going to post a picture of the pharynx here so you can see what I'm talking about. The cookie got stuck between the back of the tongue and the Epiglottis.






It didn't go into his lungs, but it stuck in this little pocket. Eventually it will just disintegrate, but he can't have any real solid food yet. His muscles aren't strong enough to push the food down without it getting stuck in that pocket. At least, though, he can officially get rid of the PEG tube because he can drink enough stuff to sustain himself. He actually gained a pound. It's not much, but it's better than losing. Now if I could just find someone who will take the PEG tube out. No luck so far. As a fallback I got the doctor at Lahey to agree to take it out when we go back in early June. If I can find someone in the meantime, great. If not, he'll just have to wait until June. It won't kill him.

Jim just came walking over to me holding a potato chip. "I can eat these now, "he says. I said, "If you can't eat a cookie how the hell did you get that down?" He said it just dissolved. Whatever. He wants me to tell his "fans" that it's sour cream and onion. He's shoving the potato chip bag in my face telling me, "Let's eat potato chips as a family." Everyone who knows Jim knows he's very strange. I'm not that wild about potato chips and besides, I'm struggling to keep weight OFF. He's struggling to keep it ON so they won't hurt him.

So he's getting there. He's come a long way in the month that he's been doing his therapy. Now he's come over to the keyboard. This is him writing....He's suffered tortures of the damned, tortures of the damned.

As for me, I had my follow-up visit at Deborah. Dr. Altimore said I had the right idea to take the beta-blocker every other day instead of every day (allright...that one was Jim's idea). I'm o.k. for now. I have to have another echocardiogram next year to make sure everything is staying stable.

Sunday May 6, 2007 9:16 PM

I never thought my life would consist of having to schedule a million doctor's appointments for Jim. But it does.

He and I saw the new shrink last week. We had to see separate doctors because they have some sort of policy about not letting husband and wife see the same person. I told Jim whatever he does, do NOT leave that office without another script for Lexapro. He was in and out in 10 minutes. The doctor heard his story and said, "Yeah, if I were in your shoes I'd be depressed too. Here, get yourself more Lexapro." As for me, I took an hour with Dr. Barb. He's a very nice, calm, collected little short guy. I could have crushed him like a bug. First, he wanted to confirm the diagnosis of bipolar. That was over quickly. Then I told him how my meds were working great for about a month or so but now my gastric symptoms are creeping back and my speech is starting to race a little again. He says with Trileptal, once you hit about week 4 to 6, and especially with people with Lupus, the drug starts to metabolize differently in the liver, so he upped my dosage and I have to go for regular blood work to check the drug level. Before I continue I have to clarify something. I'm considered bipolar II. That's not as severe as bipolar I. Bipolar II people can generally function in the world. The drive themselves crazy mostly, with some nutty outbursts once in awhile. I've had several....the time I tried to drive to Florida in a blizzard would be one of them. Picture Lieutenant Dan in Forrest Gump when he's hanging on the mast of the boat in the middle of the hurricane...."It's time for a showdown, just you and me. I'm right here...come and get me. You'll...never...sink...this...ship!" Well, that was me. And that was pretty nuts. Dr. Barb explained that the problem with bipolar II is that it gets worse as the person gets older, and it's common when going through a very stressful situation like what I'm going through with Jim that you could become a bipolar I, and those are the people that land in jail, go bankrupt, or wind up in a mental hospital for long periods of time. So the trick is to make absolutely sure I'm well medicated. Hey, I'm all for that. You don't have to tell me twice. I'll cooperate! I'll cooperate! Jim gave me such a look when I finally got out of there, like What took you so long? I told him, listen...you may be physically sicker than me but I'm definitely mentally sicker.

Jim goes for his swallow study at JFK Hospital this coming Tuesday. If they clear him for liquids and feel he can take enough calories in by mouth then he can get his PEG tube removed, so I've been trying to find a gastroenterologist here who will do it. No one will do it. Well, I haven't exhausted all my possibilities yet, but we'll see. Worse case scenario Jim has to go back to Boston in early June. Maybe we can get it done there. I've also got to work on figuring out a way to get his teeth fixed, but the gastroenterologist has got to come first.

But some good news: Jim' been able to cut some real food into teeny-tiny bits and then swallow them down with a drink. He managed the patty out of a Big Buford burger this week, and a few pieces off a roast chicken yesterday. Tonight I made meat loaf. No way is he anywhere near being able to eat like you or I, but at least he's getting some real food into himself. He's still coughing a lot, and I still worry. I worry because he's still got staph infection in his lungs. I worry because his carotid arteries are tied off...will this bring on any complications later on? Well, Jim pointed out that he couldn't have a stroke...he's out of arteries that go to his brain. I guess he's right. You've got to look at the bright side, because what else can you do. I was talking with my ex the other day and his sister's husband has just been diagnosed with lung cancer, and it's in his lymph nodes. He was telling me that I could probably identify with what his sister's going through. I told him, "Honestly, I'd really rather be me than your sister right now." At least Jim is on the road to recovery.

We got such a great response from the picture that Jim drew of his tumor coming out. Turns out Jim drew some equally great pictures of his depiction of what his jaw feels like right now and I was going to scan them and post them, but the man threw them out! Can you believe that? I was cleaning up some papers in my office this weekend and I came across this comic that I cut out before Jim went to Lahey to get his tumor removed. I thought the character on the bed looked SO much like Jim. I'll put that here for now instead: