Wednesday February 21, 2007 10:00 PM

I finally listened to my mother and went through hell on earth to try and coordinate my nuclear stress test. I go this Friday to Lahey at 7:00 a.m. The nurse here who was coordinating everything between Deborah Heart and Lung in NJ and the cardiology department at Lahey was very helpful, but she told me several times, "You know- the cardiologist says you really should go to the emergency room," and I said "Yeah, yeah...I know. But YOU know what a zoo those places are." At least by Friday I'll know if I have any blockages or not. The doctor at Deborah had three theories for why my heart is beating too fast and getting weak, well- really four theories: 1) a blockage somewhere, 2) something wrong with my thyroid, 3) a pheochromocytoma like Jim had (but if that were the case it would most likely be in a more conventional place and not in the neck) or 4) shit happens and I'll just have to start taking medication. I'm rooting for thyroid....and hopefully UNDERactive thyroid. Woo hoo! I'll have a party if that's what's wrong with me. Body Mass Index of 16, here I come! I want to look like a heroin model and then come strutting into the office wearing Prada singing, "I'm...too sexy for my shirt....too sexy for my shirt....so sexy it huuuuuurts." Then I'll get botox and try out for Janice Dickinson's modeling agency. And you guys will all be thrilled because I'll stop harping on and on about how I want liposuction. I want to be so thin I go outside and dogs try to bury me...I can't get too close to the pencil sharpener because I might fall in...they publish my picture in Ethiopia and the natives send me food.

So the social worker came in and had a long chat with Jim and I today and went over some coping strategies for Jim. She's also going to recommend a psychiatrist because some anti-depressants may be in order. Then about an hour later poor Jim had another set back. Remember how I said that yesterday they removed the stiches from his chin? The crew came in today to give him his swallowing assessment. They started by giving him a cup of water to swish around his mouth and about 5 seconds later he's leaking out of the bottom of his chin. Yes...Jim's face sprung a leak. So now they cart him down to the otolaryngologist's office and he has to put a few more stiches in. But the bad news is that now he can have no more liquids or anything in his mouth for three more days until his chin heals better. So the swallowing assessment is postponed again. But I FINALLY got the otolaryngologist to give him something for his abcessed tooth. The guys says to me, "Gee, his teeth are really in bad shape." Oh, no kidding Captain Obvious. And I mentioned the anti-depressants again, because now Jim's even further in the dumps from this set back, and he agreed to prescribe something. I's so glad I'm here with him or nothing would get done properly, because it's not like he can speak for himself. You have to nag and push and nag and push these people into getting him the proper help. Part of the problem is that Jim has too many doctors...a vascular surgeon, Dr. Jewell, an otolaryngologist, Dr. Dolan, and a neurologist, Dr. David. Dolan was in charge of opening him up for the surgery and deciding on the best way to go about that. Jewell was in charge of removing the tumor, and David was in charge of directing Jewell so that he did minimal nerve damage because the thing was coming out of his spine and was under his brain. Plus he's got other doctors coming in and out all day because Jim's a once-in-a-career case so they ALL want to gawk at him. The miscommunications stem from the fact that there's just too many people involved and they don't always talk to one another. I have to keep harping on them separately until they get their act together and get on the same page. Because Jim's case is so rare this also poses a problem for the social worker. Normally she would try and hook people up with other patients that have gone through the same thing so they can relate to one another's experiences. She'll never find anyone with a pheochromacytoma carotid body tumor. It just ain't happening.

Remember how I said two of Jim's old friends are coming up for the weekend? Well, Jim's parents decided to meet up with them and hitch a ride. They're bringing Jimmy with them too. I'm a little nervous about Jimmy seeing him in this setting, but the social worker thought it might be a good idea. And I really miss Jimmy, too, so it'll be good for me.

I'm starting to get less depressed about this whole thing, mainly because I think I'm getting used to it. I gave up on the idea of bringing my husband home somewhat normal and functional by this time. Or maybe I'm just getting numb. I can't really tell. Or maybe it's just because I'm becoming an alcoholic and a junkie. I wonder how our insurance coverage is for re-hab?

Jim's also to the point that if he wants to he could shower and wash his hair, but he won't. I think a lot of that has to do with the depression. And let me tell you....he STINKS! He stinks so bad, I don't know how to describe it. It's like a cross between cow manure and a over-filled dumpster at the back of Shop Rite in the middle of July. I said to him today, "You know, if you wanted to, the nurse could help you take a shower, or at least wash your hair." I know exactly what he's doing...they probably ask him if he wants to get washed up and he says, "No- that's o.k," and they don't push the issue because hell- it's less work for them and they're used to smelling bad things. I've been in the hospital before, and there are ways of getting around your plugged in apparatus for 10 minutes to get your hair washed. I told him when his friends come up this weekend we're just going to shave his head. We'll make a party out of it.