Monday December 31, 2007 10:15 PM

My Prednisone and Zithromax cocktail worked. I'm feeling much better and am not hacking up phlegm balls. Jim got better on his own sans drugs.

2007 is finally over. Man- 2008 has GOT to be better. Jimmy said it best at Christmas dinner. "I'm glad my Dad didn't die."

We're coming up to the one year anniversary of our meeting with Jim's first surgeon, Dr. Villanueva from Virtua Hospital in Marlton. Right after New Year's last year we met with him and he looked at Jim's scans. He told us Jim might not survive his surgery and if he did he had a forty percent chance of having a stroke on the table. He might go through the rest of his life with a feeding tube, or having his face droop to one side or his tongue permanently hanging out of his mouth. He presented the option of just going home and enjoying the rest of our time together as a viable alternative to even attempting the surgery. Jim and I had looked at each other and thought, how can we go through life like that? Not knowing if at any moment Jim would keel over? And how much time would we have had? A year? Not even that? I spent the whole month of January 2007 walking around in a fog. Then Villanueva decided to back out of the surgery altogether. Off we went to Lahey for a consult at that point. The rest is history.

Shortly before Christmas Jim woke up from a nightmare with a strange image in his head. He sketched it quickly in the morning, then sat down to draw it for real. This is the image:




Freaky, right? Jim has no idea what it is. I think it was him when his carotid burst. It looks to me like a figure emerging from a sheet and the pink represents blood. Anyway...it made for a good picture.

This Friday Jim goes for his bite test at Vanni's office. Hopefully he'll get his teeth shortly thereafter. Then we have to get Spiegel to work our new insurance company for more Vital Stim therapy. Jim was never able to do the second round of Vital Stim because the therapist wanted him to wait until he had his teeth. Now we no longer have Aetna as our insurance company, but Horizon Blue Cross/Blue Shield instead. So I guess another curt letter to Spiegel is in my near future, because the man doesn't respond to anything else.

I had to go food shopping today, and as I finish up and load the groceries into the trunk and start the car I start muttering to myself, "I HATE food shopping..." and then I stopped myself and said, "Pam, are you CRAZY? Remember the first time you went food shopping after Jim got home from Lahey and he had his feeding tube and couldn't eat? And you were so depressed that you were in Shop Rite and Jim couldn't have anything? The man can't eat everything yet but at least he can eat some things! Don't ever say you hate food shopping again!" And I was reminded of a common saying that I hear often...If God brings you to it he'll get you through it.

Happy New Year everyone!

Thursday December 20, 2007 7:39 PM

Jim and I are still somewhat sick. Not really sick, just sort-of sick. This thing has settled in my chest and I'm hacking up phlegm. This happens to me typically once a winter so I already know what to do...I'm not going to any stinking doctor. I just take my Zithromax and Predisone cocktail, which I have in the house on standy-by for these situations. I started the Zithromax yesterday, and I'm holding off on the steroid. If I'm no better by tomorrow I'll have to buckle down and start the Prednisone.

I got a call today from Vista Print, the people I order all my custom printing from. I always have our Christmas cards custom-done with something out-of-the-ordinary. Last year we had the space shuttle flying over our house. This year I had to go all out. I came up with the idea of putting Mickey-Mouse hands and feet and a big Santa hat on the scan of Timmy. Jim said, "You know that's SICK, right?" But I don't care. As Jim started the artwork he got more and more into it. So Vista Print called and wanted to know how my cards worked out and what exactly WAS that picture? I told them it was Jim's tumor. The guy laughed, then apologized for laughing. I said, "No- it was meant to be funny. It's fine to laugh. If you have to have a tumor you might as well have some fun with it." So here's the card:

Sunday December 16, 2007 8:55 PM

Last Sunday Jimmy came down with a high fever and chills. I gave him Motrin and within a half-hour he was running around like a nut again. He was fine to go to school the next day and didn't have a relapse. Now Jim and I are sick. I think it's just bad colds, but could be the flu.

Friday night we went to Haddonfield to take Jimmy to see Santa. Haddonfield's a very nice town. They have candlelight shopping, horse-drawn carriage rides, and a live nativity outside of the church on the main drag. When we got home Friday night Jim actually said he had a really good time. Jim had a really good time and was outdoors. That's a twist.



But Saturday I spent just about all day on the couch sleeping. Today Jim caught up with me and was in bed until 1 pm. We've both been living on Sudafed and Theraflu. The weird thing is that Jim's coughing less sick than he did when he wasn't sick. I'm through trying to figure stuff out. He got his weight up to 151 lbs. before the weekend, but will probably slide back down again by the time we're better.

Sunday December 9, 2007 11:09 PM

As soon as we stepped in to Dr. Vanni's office on Thursday they were all ready to go with the goop to take impressions for Jim's new teeth, so that was refreshing. No fight needed. When Vanni came in I kvetched about the sheer stupidity of Dr. Decidua's underlings. I asked him if he had had a conversation with Dr. Dew and how Dew told ME that Vanni had said Jim wasn't getting implants. Vanni was trying to be politically correct but he basically told me that Dr. Decidua's residents were idiots. Vanni said that he had FOUR phone conversations with Decidua's staff. He kept telling them what he had told ME months ago...the surgeons were going to have to make the determination once they pulled the teeth and took a look at Jim's bone structure 1)how many implants could they place, 2)what type of implants could they place, 3)where could they place them, and 4)could they place them at ALL. I told Vanni that I had also had TWO conversations with them along a similar vein, repeating what he had told us back in the day. Vanni just shook his head.

He took all of Jim's stitches out and we have to come back on January 4th for some kind of "bite" assessment, then Vanni will make the teeth. I found out what the "four to six months" from his office staff was all about. They apparently let the implants heal four to six months before they get finished off and the dentures attached to them. But they don't wait four to six months to make the teeth. DUH. Jim will just have to wear the dentures without them being attached to the implants. It's better than nothing. Vanni said the lowers probably won't be that stable during that time, but Jim can live with that.

Jim will have to go back to Decidua's office for a post-op visit, and I'm going to tell Decidua a thing or two about his residents. Not for nothing....if you can't deal with people and you can't process the spoken word then you really should find another line of work. I don't care how skilled you are. Those guys should just become engineers and design shampoo bottles tucked away in a lab somewhere. Hey...it's useful work. We all need shampoo bottles.

While out Christmas shopping I found some teeth for Jim. Here they are:

Wednesday December 5, 2007 10:14 PM

Jimmy's 24-hr urine test came back negative, so that's good news. Now I just have to get him and Jim into a geneticist to see if they can 1) identify a defective gene in Jim and 2) see if Jimmy also carries the gene. If Jimmy does, then we'll have to be on high alert. If not, we can breathe easier.

Jim still has no teeth. I'm running out of things I can cook that can be eaten with no teeth, and can be eaten by someone with reduced swallowing ability. There's only so much you can do with crumbled hamburger meat. I'm dying for a steak. We haven't had steak since February. Jim says he noticed his swallowing ability has improved, but that doesn't do him much good now that he can't chew.

I forgot to mention something in the last post. I had called Dr. Vanni's office a few weeks ago....Dr. Vanni is the guy who's supposed to make the teeth. His nurse had told me to make an appointment for Jim after his tooth pulling surgery, so I called to do that. I got some other twit on the phone who said that Dr. Vanni wouldn't put teeth in Jim's mouth for four to six MONTHS. I told her, bullshit...the guy's supposed to be toothless for four to six months? I don't think so. Then the twit asked, "How many teeth did your husband have pulled?" I said, "ALL OF THEM!" Duh. Then she put me on hold for a couple of minutes and said, "Ok. Come in December 6th." So that's tomorrow. Oh, and I'm definitely going with him to THIS appointment. My chain-yanking tolerance is wearing thin. And I'm not going away. Now, there's been a LOT of instances in this whole ordeal that we've had to get ugly with these doctors. And that simple fact is a damn shame. People shouldn't have to go through this crap to get helped.

And now that the swelling is down you can see that Jim's gums are sewn up with more stitches than a Sumo wrestler's goofy undies. The stitches are starting to flop all over the place. Dr. Vanni better take them out tomorrow. Worst case scenario, I've got a seam ripper from Walmart that should do the job.

Sunday November 25, 2007 10:50 PM

Awhile back I had mentioned that my ex-brother-in-law had lung cancer. My ex was telling me that he thought his sister could probably relate to what I was going through, and I told him that even though Jim and I had been through hell, I'd still rather be me right now because at least Jim didn't have cancer. Well, that brother-in-law died on the 15th. Greg called me the next day, Friday the 16th, and let me know. At first I thought I'd just send his sister a letter offering my condolences because I was afraid her family might shoot daggers at me if I went to the wake, but then I thought about it some more. Those people were family to me for sixteen years. I remember when George first dated Karen. I was at their wedding. It was their tainted meatballs they fed us on Christmas Day in 1996 that made my stomach problems flare up for two years after I got over the food poisoning. I decided to go and pay my respects in person, even if I got beat up. I decided to take Jimmy with me. The Venezia's wouldn't be rude to me if I had a six-year-old in tow. Besides, it's about time Jimmy got acclimated to a wake. By the time I was his age I was old hat at them. I told Jimmy exactly what to expect, and I showed him pictures of George. Jimmy said, "I don't want to see a coffin!" and I told him it's like a piece of furniture. Just think of it as a coffee table. It's like the body's put into a very expensive coffee table. A very, very expensive coffee table.

Jim decided to come. He and Greg chat it up like old buddies whenever they're together anyway...the common thread they have is telling wacky stories about my mother. I had Jim try on one of his old suits to see if he could get away with wearing it. NO WAY. He could have fit two of him in there. So I ran out to Kohls to buy him a couple of sport jackets and pants. He likes to wear sport jackets to work now to cover up how thin he is. Last Sunday we went to George's wake. A couple of people shot daggers at me, but most were very nice and were glad that I came. As I was standing in the hallway at one point, Jim says to me, "Turn around..." What? I said. Is there something on the back of my coat? And he said, "I just wanted to check if you had any knives sticking out of your back..." Ha ha ha. But I couldn't help but think about the parallels between Jim and George. How easily it could have been ME up front by the coffin. And it's not. There but for the grace of God go I.

On Wednesday I finally got my own bloodwork done. Dr. Barb needs to check my Trileptal levels to make sure the drug is working. He's also doing the basics...CBC and what-not. And he's checking my glucose levels to make sure I'm not diabetic. I also picked up the pee-pee jar for Jimmy's test.

Thanksgiving we went to my mother-in-law's. She always does Thanksgiving and I do Christmas. On the way over in the truck I had a panic attack. I was fine, and then all of a sudden I was feeling nauseous, my hands were shaking, and I felt light-headed. I popped a Xanax and made Jim pull over so I could lay down in the back of the truck. By the time we got there I felt better, but then the in-laws started pumping me with wine, so I was high as a kite. I slept REALLY good that night.

Friday Jimmy went to Dr. Rothman....the doctor my mother works for part-time, for a cognitive test. Dr. Rothman had noticed some "signs of inattentiveness" in Jimmy when he gave him his eye exam, hence his request to do these tests. Inattentiveness? Ha ha ha....not my Jimmy. There was one test where Dr. Rothman did three motions with his hands onto the tabletop in combinations of four moves...one closed fist, one open hand with palm down, one with hand upright on it's side. You had to watch what he did and then repeat it...kind of like the game of Simon but without the musical notes. Jimmy did horribly on that one, but I noticed something...I couldn't do it either. By the time Dr. Rothman got to the last move I had forgotten the first two. It was actually uncomfortable for me to watch the doctor. My mind just wanted to shut down...STOP...STOP...I can't take it anymore! I do really well with remembering verbal queues...for all-state chorus auditions when I was in high school they'd play you 16 random bars of music and you had to repeat it as perfectly as you could, and in perfect pitch...and THAT I aced, but the visual? Forget about it. So if this test was some measure of Jimmy possibly having ADHD then I know where he probably got it from. Maybe this is why I work better when I talk to myself. It's so much better that I work from home now. I can chat it up all the time and no one is there to stare at me like I'm nuts. Dr. Rothman is going to score the tests and then call me this week with the results.

Saturday I had Jimmy pee in his pee-pee jar all day. He only went twice on Saturday so that wasn't hard. The preservative that they put in the jar before the give it to you to take home made the urine smell DISGUSTING! Jim and Jimmy and I were gagging, and Jim ran around lighting candles to get rid of the stench. We have to store it in the refrigerator (good thing we have one in the garage) and then I have to drop the jar off at the lab sometime tomorrow.

Wednesday November 14, 2007 10:36 PM

I GOT THE SCRIPT FOR JIMMY'S TEST! He had Dr. Hill tonight, who's a woman. There's four doctors working out of this practice. Jimmy only saw Dr. Hill once...a few years ago when we first moved to Sicklerville. The doctor that poo-poo'd me, Dr. Levy, is no longer with their practice. Jimmy was due for some shots. I brought Jim with me, and when the doctor walked in I told her, "I need to talk to you about something without Jimmy here because I don't want him to get S-C-A-R-E-D." Thank God Jimmy isn't a good speller yet. So Jim took Jimmy outside for a little bit. Dr. Hill was a sweetheart...she didn't know much about pheos, so I had to educate her. The first thing I asked was, "What's the first thing you do when you get up in the morning?" And she said, "Pee", and I said, "EXACTLY!" I told her the story in 1000 words or less and when I got to the part about Jim going normally like the rest of us now she agreed that Jimmy should be tested. I had to tell her the name of the test. It's called the 24 hour urinary catacholamines and metanephrines test. She also gave me the names of two geneticists. I did a little research and found that the most likely gene mutation in someone who's had a functional paraganglioma in the neck (that's just another phrase to describe what Jim had) is a "germ-like mutation in SDHB, C, and D." I'd like to find out if Jim and Jimmy are carrying this thing. I also told Dr. Hill about how difficult it was to get Jim into an endocrinologist. She couldn't believe it. I told her that as a doctor, other doctors will give her courtesy, but the layperson gets BUPKIS.

Now that Jim's ordeal is winding down, we've been swapping some stories about each other's experience at Lahey that we can laugh about now, but were not funny at all at the time.

Jim's funny story: While having a bad reaction to the sleep-aid Ambien, he was convinced that the nurses were part of a military conspiracy. The military was apparently doing experiments in hospitals manufacturing t-shirts that made people cough, and Jim was one of their test subjects. He spent one full night trying to pull out all of his apparatus and escape the hospital. The nurses had to keep watching him, but luckily he never got fully unplugged and out of his room. It got so bad that the nurses turned the alarm on in his bed. They told him, "If you get out of bed, the alarm will go off. Why are you trying to get out of bed?" They stopped giving him Ambien after that.

My funny story: The night before Jim coded I had given him a couple of Listerine pocket pack strips because his breath was so bad. When we arrived at the hospital and he was bleeding out of his burst carotid artery, not only was I panicked because I was convinced he was dead, but I also thought I killed him by the caustic action of the Listerine pocket pack. I thought the Listerine had somehow seeped through the stitches in his mouth and pooled in his neck causing his carotid to be eaten away by mouthwash. And how would I explain to everyone that it was all my fault?

Monday November 12, 2007 10:08 PM

What bullshit I'm going through trying to get Jimmy tested for a pheo. Let me back up here....when Jim went to Dr. Altimore at Deborah Heart and Lung and had a 24-hour urine test, Altimore suspected a pheo because of Jim's off the charts adrenaline numbers, so they gave Jim a MIGB scan...that's a type of nuclear scan...but since pheos are usually on the adrenal glands they just scanned Jim up to his neck, and they couldn't find the tumor. At that point Dr. Altimore told Jim to see an endocrinologist because pheos were more in their area of expertise. Jim must have called ten endocrinologists in our health plan. Some said they would call him back and never did. Some couldn't get him in for at least six months because he wasn't a current patient. One even told him that if his MIGB scan showed nothing then they wouldn't see him at all. The only one he could get into was Dr. Horowitz in Cherry Hill....he got an appointment in four weeks...and she turned out to be a very, very good doctor, so in the end we were lucky.

So now I'm on a quest to get Jimmy tested. I called Horowitz's office first. She doesn't see children. Then I found three pediatric endocrinologists listed on Thomas Jefferson's website, so I called one of them. The receptionist hemmed and hawed and then put me on hold. She got on after a little while and said that she spoke to the physician's assistant and maybe I'd need to take Jimmy to a renal specialist, but she'd have the doctor called me back. This was on Friday. Three guesses whether they called me back or not and the first two guesses don't count. Yeah...BINGO. This just demonstrates how doctors don't have a CLUE when it comes to pheos. They never see them because they're very rare. Did you know that 50 percent of pheos are diagnosed at autopsy? That's a damn shame. Jim said that worst case scenario, if we have to take Jimmy up to Boston to get him checked out then we will. I want to try a few more avenues before we resort to that.

I scheduled an appointment this Wednesday with Jimmy's pediatrician. This is a group of four doctors. One of them poo-poo'd me when I asked about getting Jimmy scanned. What I plan to do is to bring my information about pheos with me and DEMAND that they write a script for the 24-hour urine test. I'm not leaving the office without it. Then I want a copy of the results sent to me DIRECTLY so they don't sit in some doctor's file somewhere and I never get a call about them. Jimmy needed a flu shot anyway so the visit won't be a total loss if I don't get my way. But you guys all know how aggressive I can be when I need to be, so I'd lay odds on me winning.

Thursday November 8, 2007 10:09 PM

Jim’s being a royal pain in the ass because he won’t eat. Yeah- he can’t chew- but he can have soup. He can have cream of wheat (which he likes). He can have other soft things that go down easy. Lord knows the man can’t afford to lose any more weight, but he won’t fix himself anything. It’s almost like he’s acting like a little kid…the more I mention the fact that he needs to eat the more he refuses to do it…like he’s punishing me or something. The only one it’s hurting is him. So I wind up heating soup for him and putting it in front of his face. Then he’ll eat it.

The day Jim’s teeth got pulled Dr. Decidua prescribed Clindamycin for him for ten days. That’s a broad-spectrum antibiotic. The problem is that Jim’s on his third round of treatment for c-diff because he can’t shake it. If you take broad-spectrum antibiotics when you have c-diff, it disrupts the balance of bacteria in the gut and flares up the c-diff, so I told Jim maybe he should forgo taking the Clindamycin unless he gets a fever or an active infection. Jim agreed with me. Doctors are forever giving antibiotics “just in case” and there’s no reason for that. You shouldn’t be taking that crap just for shits and giggles.

Jim was healing nicely. He’s asked me a few times if I can see the implants in his mouth. I think they’re in the back in front of where his wisdom teeth would have been, but it’s hard to tell. I can see a faint glimmer of something that looks silver. It still looks like there’s some teeth in his mouth because of a lot of white material that’s exposed, but that’s actually his bone. He must have good bone structure in there because it’s very prominent. It’s a white ridge going across the front. He’s starting to get that sunken toothless look a little bit, which I know embarrasses him, but it will only be for a little while and it will all be over. A small price to pay in the long run.

Last night I drove up to my mother’s to drop Jimmy off for a couple of days (teacher’s convention- no school) and when I got home around 11:30, one side of Jim’s face was suddenly very swollen. He looked like chipmunk cheek. But he said it was just a little sore, not really painful, and he didn’t have a fever. This morning it’s back down to normal size. No Clindamycin needed yet. Hopefully it stays that way.

Many doctors and dentists Jim saw over the years asked if he ever did crystal meth, because he had classic “meth mouth”. Jim never did any of that shit, but you could tell some of these doctors didn’t believe him when he told them so. So that got me to thinking….I wonder what the process is with crystal meth users that actually destroys their teeth? What is in the meth to make the teeth go bad? So I looked it up online. Using meth causes the body to flood with adrenaline and epinephrine. Those substances make the blood vessels that supply the gums shrink, reducing the blood flow to the teeth. The high adrenaline level also decreases saliva production, allowing the stomach acids to eat away at the tooth enamel. Well, guess what a pheochromocytoma secretes? Adrenaline and epinephrine. There you go. So in reality, Jim really DID have “meth mouth”, just not caused by using meth. I asked him when his teeth started going bad. We’ve been together eight years, and in the beginning they weren’t great, but they weren’t horrible either. He said about eight years ago. You figure the adrenaline would need a little time to start working away at your teeth, so I guess that would date the tumor to somewhere around nine years ago. It’s really funny how seemingly unconnected problems with your body can be traced down to one root cause.

Remember how I’ve mentioned in this blog that pheos tend to run in families, and the doctors at Lahey were talking in the beginning about doing DNA tests to identify a gene in Jim that was carrying this thing? They didn’t push it while we were there and I was too tired to pursue it, but I think I’m going to have to take Jim and Jimmy to a geneticist, and get Jimmy tested with an endocrinologist. I’m a little worried about Jimmy possibly having one of these. First, one symptom in children is night sweats. The last couple of years, Jimmy sweats so much at night that I’ve had to keep a towel over his pillows when he goes to sleep, because if not, the pillowcases are soaked through by the next morning. There were a couple of times when I checked on him late at night that I had to wake him up and change his pillowcases because the bed was sopping. Another weird thing about Jim that we just chalked up to “weird thing about Jim” was the fact that he never had to pee. What’s the first thing everybody does when they get up in the morning? Pee, of course! Doesn’t matter if you’re male or female. But Jim could be up for hours until he had to go. MAYBE he’d have to go twice a day…tops. The high level of adrenaline also causes decreased urine production. Now that the tumor’s out he goes first thing in the morning like normal people. Jimmy doesn’t pee either. In the morning when he gets up I force him to go in the bathroom and at least TRY to go, but if left to his own devices on the weekends he’ll go several hours after getting up before he goes to the bathroom. I used to joke and say, “Like father like son,” but now I’m starting to get concerned. I’m not freaking or anything, but we need to check this out. I had mentioned testing for a pheo to his pediatrician once but the guy just poo-poo’d me. I’m not listening anymore. Even if, God forbid, the kid has one, the chances of it being in the neck near vital nerves is extremely, extremely slim. These things are almost never in the neck.

Tuesday November 6, 2007 9:31 PM

Those terrible rotten stumps of teeth that used to be in Jim's mouth are now OUT. Thank God.

Decidua's office told us to get to the hospital at 7:15 a.m. yesterday. So I had to get my in-laws to come down Sunday and spend the night to get Jimmy ready for school in the a.m. and Jim and I left for Philly at about 6:15. THEY DIDN'T TAKE HIM BACK TO GET PREPPED FOR SURGERY UNTIL 11:30! Can you believe that? After we had sat there for a couple of hours I talked to the charge nurse and found out that Decidua had two procedures in front of Jim. So there was NEVER any reason for Jim and I to be there that early. A TOTAL disrespect of our time. You can imagine how hot I was. I told the charge nurse to let Decidua know that he better find some aloe vera gel because I was gonna make his ears burn when I got a hold of him. And I did. But he blamed it on his office staff. Yeah, right.

Remember the debate last week about whether or not Jim was getting implants? I saw the release form that Jim signed when he went for his pre-op testing and he could have nipped that in the bud a long time ago. The implants were not on the release form. If he had actually READ the thing before he signed it we could have ironed this out in advance, but it's water under the bridge now. I made the nurse amend the release and I told Jim to not let them knock him out until he heard from Decidua's lips that he would do those implants during the tooth pull.

I had to wait in the happy-happy-joy-joy room again. A couple of dirty old men were chatting it up with me....I managed to avoid them for awhile reading a book but when I finished the whole book from cover to cover I couldn't keep avoiding them. One of them was there for his wife who had a mass on her pancreas. Boy, I'm glad we're not in that position. No matter what you're going through there's always someone worse off than you. Then thankfully they called me over to talk with Decidua. The first thing out of his mouth was, "I'm glad you and your husband decided to go with the implants. It will hold the lower dentures in so much better." I told him, "We never DIDN'T decide to go with them. I don't know where this whole debate CAME from."

Jim had to sleep it off for awhile so we didn't get out of Philly until about 6:30 pm. He had quite a bit of bleeding from his mouth all night but it finally calmed down by this morning. He says he feels pretty good. He doesn't have much pain. They wrote him a script for percocet but he hasn't needed to take any so far. I'm worried about him losing more weight by not eating so I keep putting food in front of him and making him eat it. He would never make the effort to make himself something. Sure, he can't chew, but he can have soup. He's not a good patient. He's a total pain in the ass.

So now he's got to heal for six weeks and then he'll get his teeth.

Saturday November 3, 2007 10:39 AM

Big drama over Jim’s teeth. Here’s the breakdown of the players involved: Dr. Decidua is the maxiofacial surgeon. He’s been sick so he’s delegated to Dr. Tursin, who I’ve never met- only spoken to on the phone, and Dr. Dew, the idiot we met at our first appointment with Decidua- the one who asked, “Do you want ALL his teeth pulled out?” Then there’s Dr. Vanni in North Philly- the one who’s going to make the teeth. The game plan from the get-go has been for Jim to get something called overdentures, which are just dentures but they’re held in place by implants. Dr. Vanni had told us that Jim will either get four large implants, or eight small ones, but we won’t know what course will be taken until the teeth are pulled and they take a look at Jim’s bone structure under the teeth.

Now, very little of this is covered by insurance. Our plan only provides for 2K a year in benefits, and that’s getting eaten up by the cost of the extractions. The implants would normally be covered at 80 percent, but at a couple grand per implant, even if Jim had insurance money left, that would only be a drop in the bucket. So this is going to cost us major, major bucks. I’m guessing about 20 grand. We’re going to HAVE to move to Idaho after all this so we can get away from our creditors. Ha ha ha.

So Tuesday I get a message on our answering machine from Jill at Dr. Vanni’s office giving me the cost of finishing the implants and for the bar that goes into the dentures. See, not only do you have to pay for the implants, you also have to pay another $2500 for getting them FINISHED. I couldn’t call her back on Wednesday because Vanni’s office was closed. But I get a call Wednesday from Rita at Decidua’s office. She tells me we’d have to pay our portion of the extractions up front: $603. I ask her about the implants. She seems surprised. She says it was decided that Jim wasn’t getting implants- just dentures. I asked her, “Who decided THAT? No one spoke with US about it.” Rita said that Dr. Vanni had spoken with Dr. Dew and Vanni told Dew no implants. I told her, “Then why did Jill from Vanni’s office leave a message with the cost of finishing the implants? Our plan all along was for implants.” I know where this came from. Dew never has his listening ears on, and he’s an idiot. So I’m on the phone throughout the day with Tursin and Rita, and finally they call me and say that the implants are $1800 apiece and they’d place four of them. I say to her, “Is that the Guardian contracted rate or the I’m-walking-in-from-the-street-with-no-insurance rate?” See, I learned last year when Jim’s prior dentist was working up a price for us that if the provider contracts with your insurance plan, even if an item is not covered, the dentist has to charge you the insurance contracted rate, not the regular rate, but dentists always want to try to get over on you hoping you don’t know that. So I stood my ground with Rita, and she called back to say the implants were now $1500 each. She suggested that if Jim wait until January to get the implants that $2K of that would be covered. Well, I thought about it, but how could I put Jim through getting his teeth pulled, healing for six weeks, and then digging his gums up AGAIN to put in implants? No. The guy’s been through too much this year. Jim said he would wait, but you could tell that’s not what he really wanted to do, so I told Rita to go ahead with the implants on Monday. So away we go.

We won’t know what time the surgery is scheduled for until Sunday night.

Tuesday October 30, 2007 9:36 PM

Jim saw Beth on Thursday and she liked what she saw. He can open his mouth up into the normal range now...well- the low end of normal, but normal. However, she doesn't recommend he start therapy again until he has his new teeth. And before he starts his first therapy visit he'll need to have another barium swallow study done. If he gets the teeth pulled next week and has to wait for his new teeth to be ready, and our insurance winds up changing January 1st, I don't know what's going to happen with therapy. I don't want him approved through Aetna for 60 days and then he can't finish. I guess we'll have to cross that bridge when we come to it.

On Friday night I heard from Dr. Kozuch about my bacterial overgrowth test. I also asked her about my fungal infection because it's back. She's stumped as to why this keeps happening to me. In the meantime, she prescribed more Diflucan and an antibiotic. I take the Diflucan first, then when that's done start the antibiotic. I tried to fill the prescription for the antibiotic and it has to be pre-approved. So much for that. Good luck getting the pharmacy and Aetna and Dr. Kozuch to all connect. I still haven't heard back about it. I guess I'll try to call Kozuch again tomorrow.

Jim saw Useless Sobel yesterday and got his approval for his surgery next week. Jim told me it was a total joke...he was in there for five minutes. He had to trek all the way to Philly for that. But at least it's done and he can get these teeth over with. What he has in there now is just GONE and he's missing so many it's interfering with his ability to talk.

Wednesday October 24, 2007 9:26 PM

So I'm back from Minnesota. I have such luck on airplanes. On the way over for trip number one I sat next to Old Man Fart's-a-Lot, and I mean lethal. It smelled like the guy had a colostomy bag. On the way back I sat next to Garlic Lady. Then on the way over for trip number two I was next to Very Large Woman which forced me to squish over to the left side of my seat, and on the way back I had Old Lady Who Doesn't Understand You Can't Sit With Your Elbows Sticking Out In Coach. Yes lady- those were my ribs. But it's all over now and here I am back in New Jersey.

Jim has an appointment with Beth on Thursday for an evaluation. Next Monday he's got to go back to Thomas Jefferson in Philly to see Dr. Sobel (the one who was as useful as eyeglasses on a blind man) so he'll give him a letter clearing him for his tooth surgery on November 5th. Dr. Decidua's office is all panicked and won't do his surgery without a letter. Give me a break. Speigel did the throat stretching surgery without a letter, but whatever.

I finally stayed off antibiotics three weeks in a row and was able to have my bacterial breath test with Dr. Rivera yesterday. I'm not surprised at the results. I flunked miserably. They bring you in and you breathe into a bag for a baseline, then they give you this syrupy stuff to drink, and you come back in a hour and breathe into a bag again. They're measuring Carbon Dioxide, Methane, and Hydrogen in your breath. If the numbers are too high you have too much bacteria in your gut. I flunked before I even drank the drink. Then I flunked miserably after the drink. And Dr. Rivera told me that smoking brings the numbers down, so they would have been even worse if I was a non-smoker. No- she didn't give me a license to smoke. This explains a lot of things. It certainly explains why Cipro, which is an anti-biotic, was the only drug that helped me for all these years. So I've backed into my diagnosis. But I've got to wait to hear back from Dr. Kozuch to see what I do next.

Wednesday October 17, 2007 10:29 PM

So guess who called Jim yesterday? Beth, his therapist from Marlton Rehab Hospital. Dr. Spiegel's people actually called her and they're getting the ball rolling on his therapy. He goes next week for another evaluation, and after that he'll have to have another swallow study. Then another sixty days of therapy from there. Being a bitch DOES work. It's really a shame, but sometimes that's what you have to do.

I'm still in Minnesota. It's rained almost every day this week. This is a very useful class, though, so I'm glad I'm here. But three trips in five weeks is a bit much. At least this is it for awhile. I went to the Mall of America. All I can say about it is as I drove up the street approaching the place I said "HOLY SHIT!". The place is huge.

One of the employees here at the training center brought in homemade cookies today, which were delicious, but they were WAY too rich. They were filled with all kinds of stuff and then topped with drizzled chocolate. But sometimes more of a good thing is just too much. A couple of us were nauseous after eating one, and that sucker's still laying in my gut. I'm going to crawl in bed now and hope the lead cookie moves through my system.

Saturday October 13, 2007 5:12 PM

Some things to note this week: Jim tried to eat one of those soft chewy pretzels, which I didn't think was going to be such a hot idea. He doused it with tons of mustard and got it down. About ten minutes later he comes into the family room to watch t.v. and he coughs, then I see him chewing again. I look at him and ask, "Are you re chewing what got stuck?" Yeah, he says. So gross. It's like a cow chewing a cud. Then later in the week he tries a bagel. That took about four hours to get down. Literally four hours.

I still hadn't heard from Dr. Spiegel by mid-week, so I called and talked to an idiot. Friday afternoon I spoke with the idiot again. After I hung up I dashed this letter to Speigel off and faxed it to him. I wrote it like it was coming from Jim and had him sign it, but it's all me. I think this sums everything up nicely:

Dear Dr. Spiegel:

I write this letter in a state of frustration. As you will hopefully remember, I was a patient at Lahey Clinic in Massachusetts this year and had a carotid body tumor removed, leaving much damage to my ability to swallow. Upon release from Lahey Clinic, my ENT at that hospital arranged for me to have Vital Stim therapy at Marlton Rehab Hospital in Marlton, NJ. I made much progress there. However, my insurance company, Aetna, would only cover my Vital Stim therapy for 60 days per diagnosis. One of the purposes I had in mind in becoming your patient was so that you could assist me in devising a new diagnosis code so that I could continue my Vital Stim therapy. My wife and I made this very clear in our initial meeting with you. At that time you suggested I have a manometry study done.

Dr. Rivera was unable to perform the manometry study. She attempted this three times. Dr. Rivera told us that she would report this fact to you and we should get a phone call from your office advising us what we should do next. We never received a call, so we scheduled another appointment with you to discuss how I could get more Vital Stim. At that visit you suggested a throat stretching procedure, which was done approximately a month ago. My wife reminded you of the need for Vital Stim on the phone while she was in the family waiting room after the procedure. You told her that it would be discussed at my post-op visit.

At my post-op visit you asked me if I had ever heard of something called Vital Stim. I find this very frustrating because that’s all we’ve mentioned to you in our past office visits. You suggested I go for a manometry study. I pointed out to you what happened when Dr. Rivera attempted my last manometry, but you said I would stop by your office first to get numbed up, and then go to Dr. Rivera, and someone from your office would call to make the arrangements. No one ever called about this. My wife spoke to Dr. Rivera earlier this week and Dr. Rivera told her that she had already spoken to your nurse and told her that attempting another manometry would be a waste of time. She had already numbed me and had attempted the study three times.

I got a call from someone at your office this week. My wife explained all of this to this person from start to finish. We were told that you would be calling us back. My wife just got off the phone with your office about a half hour ago and that person merely had a list of Vital Stim therapy facilities. This is not what we have been asking for. I don’t know what else to do to get what I need accomplished, as I can’t possibly have communicated what I need any more clearly. Please advise where we should go from here.



Sincerely,


James Primiani

....Nuf said.

I've been pestering Jim to draw something else for the blog. He drew the following with his Wacom drawing tablet for his p.c., whatever that is.



Tomorrow I'm off to Minnesota for another training class again. Three trips in just a few weeks. Ugh. It's killing me. I saw Dr. Barb the shrink this week and he added some Lexapro to my Trileptal to help out with the post traumatic stress shit. Jim's shrink also upped his dosage a little.

Saturday September 29, 2007 8:18 PM

So here's a funny one. Jim goes back to Speigel for his post-op visit this past Monday. I've got to back up here. We mentioned to Speigel the first time we were there back at the beginning of the summer that we needed him to come up with another diagnosis code so Jim could get another 60 days of Vital Stim therapy out of Aetna. That was when he decided to send Jim to have a manometry study done. Jim had to cancel the first one because he had c-diff. Then when he finally was able to do the manometry Dr. Rivera couldn't get the tube up his nose because of his bone structure, so she had to pack it in. So we went back to Speigel and asked about the Vital Stim again. That was when Speigel scheduled him for the throat stretch surgey. When I spoke with Speigel after the surgery I mentioned Vital Stim again, and he said to bring that up at the post-op visit. So here Jim was in his office, and Speigel says, "Have you ever heard of something called Vital Stim?" DUH. BIG DUH. Jim's happy I wasn't there with him. I would have said, "Hey Dr. Speigel...when we talk to you, do you bother to write anything down? I guess not." On top of THAT, he tells Jim he wants him to have a maonometry done first. Jim reminds him that we tried that already and it didn't work. Speigel says to come to his office before the procedure and he'll numb him up really good, then he'll head down the street to manometry. He said someone from his office would call to schedule it. Well, no one's called, and I don't think it's going to work anyway. But it's just as well, because our insurance may likely change on November 1st anyway, so it's probably better to do this after the change. Speigel also said that Jim's throat is healing nicely, but it's still swollen so he won't feel the full benefit of the surgery yet.

I got a call from the maxiofacial surgeon to schedule Jim's tooth pull. That's set for November 5th. I'm hoping the insurance change won't screw that up, but the surgeon's office told me they accept all the major carriers, so I'll cross that bridge when we come to it.

I'm off to Minnesota tomorrow for another training class. I'm going with Polito. I stocked up the fridge with all kinds of microwaveable food so Jim and Jimmy can eat. One thing about Mom's going on a business trip....a guy can just pack his bags and go. A Mom's got to go food shopping and do all the laundry before she can go.

Sunday September 23, 2007 10:26 PM

Tuesday I got a disposable camera and went back to snap pics on the stairs where I fell. As I was peering through the viewfinder it was even more obvious to me that looking at them from the top down you can't tell at all that there's an extra step at the bottom of the main stairs. If they look as treacherous in photos as they were in real life I'm going to contact the Camden County Bar Association and see what a personal injury lawyer has to say about my Dance of the Flying Phone Geeks.

Friday was my last day of class in Virginia, and I talked to Jim first thing in the morning. His c-diff has flared again. He wasn't sure if he was going to be able to get Jimmy onto the bus- he might have to call the neighbor. As soon as he tells me this, MY insides start churning and I don't feel well either. So I popped two flagyl and everything started to slowly calm down, but not before I had my c-diff contaminated behind in the ladies' room a few times. Dr. Kozuch had given me an alternative medicine to use instead of the flagyl but it's a powder that you have to mix with a drink. Talk about impractical. How was I supposed to accomplish THAT during class? Give me a pill....I don't have time for mixing powder.

I drove home from Virginia in the afternoon and when I got home I layed down for awhile. Jim was starting to feel better because his flagyl had kicked in. I must have asked him four or five times to call Dr. Kozuch. FINALLY he did that and left a message. My in-laws came over that night with a baked chicken. But as soon as Judy cut it up my kitchen had a funky smell. Everyone smelled it. I blamed it on Jim farting, but that chicken smelled like ass. (Note to Joey....you tell your mother that I said the chicken smelled like ass and I'll pop you. Don't be stirring up any trouble. You know they don't have internet and will never get it so I'm safe telling the truth.) I can't even put that chicken in the trash yet because the garage will smell like ass before trash day. It's covered with Saran wrap in the fridge to hold the ass smell in. Jim said, "Now you know why I was so skinny living at home." But Judy meant well, and we thanked her and just pretended we weren't hungry.

While the in-laws were still there we get a call back from Dr. Kozuch. First she talks to Jim, calls in more flagyl for him, tells him to try my powdered crap, and schedules an appointment for him to come see her. Then she gets on the phone with me because she has my biopsy results from my tests last week. First, she tells me that I had the worst case of candida of the esophagus that she ever saw. I think she used the term "a petri dish full of flora". My next step there is to find a pulmonary specialist to find an alternative to my Flovent inhaler, because that's the likely cause, and the infection will just keep coming back. Then she tells me that besides chronic gastritis I also have something called intestinal metaplasia, which really has nothing to do with the intestines. It means that the cells in my stomach are no longer stomach cells. They have morphed into intestinal cells, and this is a pre-cancerous condition. There is nothing I can do to reverse it or to stop it. All I can do is go for regular biopsies to make sure the cells haven't morphed further into cancer cells. Now, just because I have this doesn't mean I will get stomach cancer....I just have to be on high alert. She went on to say that if this were in my esophagus, I'd be in big trouble, but if it's found in the stomach there is no directive in place to dictate what is done. There is no standard among physicians to say "intestinal metaplasia....do XY and Z". So we'll watch it. I have no previous stomach biopsy to compare this to, but I wouldn't be a bit surprised if my stomach's been like this for years. I haven't been able to properly digest my food since 1987. My previous doctors all thought the issue was a problem in my colon. Little did they know all I had was one big colon from the bottom of my throat all the way out.

So my response is...whatever. I'm a little grossed out, but there isn't jack I can do. Jim and I both felt lousy this weekend, but we managed to take Jimmy to a movie last night and then to Creanies for ice cream. Jim's got an awful cough. I'm calling Dr. McAndrew tomorrow whether he likes it or not. He sounds terrible and I'm home for this week and then off to Minneapolis next Sunday for another class.

Monday September 17, 2007 9:42

Calamity Pam strikes again. I'm in Virginia for a training class this week. I went downtown to class today, parked in the parking garage, and fell going down the stairs. But these were some funky stairs. You know how risers all have to be a certain size or else you fall on your face? The last one was only 2 inches tall and I wasn't expecting it so boom....suddenly I'm doing the Chicken Dance with no music, twisted myself, and the top part of my left foot wound up breaking my fall. Got it x-rayed and it's only sprained, not broken. But there goes the idea of walking to class tomorrow. I'm so glad it's not broken because I only brought pants that would never fit over a cast.

Jim's home alone, and he sounds like crap. He can't get three words out of his mouth without choking and gagging, so I can barely understand him on the phone. He goes to see Dr. Spiegel after I get back. Can't wait.

So other than the foot my trip is o.k. Except for the fact that I got almost no sleep last night because the toilet is going drip drip...drip drip...I tried shutting off the water to the thing but what was left in the tank just continued to drip. It doesn't have a regular mechanism inside...you know- with the flapper and all that jazz...or I might have been able to fix it myself. It's got some new system in it that I know nothing about. I think it got fixed today. I'll know when the room is quiet and I'm trying to sleep.

Friday September 14, 2007 5:07 PM

Wednesday I was scheduled for my upper endoscopy, colonoscopy, and manometry study at Thomas Jefferson. Part of the reason I’m doing this is because I’ve had digestive system problems for years and never really got a definitive diagnosis, and partly because I’ve been feeling really lousy since I got the c-diff. Every morning I wake up and I’m queasy until I get myself going, and I’m sick of it. It’s really starting to wear me down. When I got my records from my last gastroenterologist for Dr. Zozuch to look over she saw that I never really had proper biopsies done, so that was the plan for Wednesday. Turns out I have Esophageal candidiasis, which is a fungal infection in the esophagus. Sounds lovely, right? I’ve had a chronic problem with that for years now, though…it’s the thing that killed my vocal chords.… and I’ve taken anti-fungal drugs and the damn thing just keeps coming back, so long term I’m not sure what I’m going to do about it. I still have to wait a week for the biopsy results to come back because Kozuch wants to look at the cells from my stomach, small intestine, large intestine, etc., plus I still have to go for a bacterial overgrowth test in October. But in the meantime I’m taking my diflucan, and I think it’s helping because I’m starting to feel a little better, but I’m having weird stabbing pains from where she took the biopsy samples. Whatever.

As for Jim, we’ve had a little milestone, but he doesn’t see it with the same fanfare as I do. Back when he was in the hospital he kept saying that when he could eat again, the first thing he wanted was Kentucky Fried Chicken. Last night we picked up Kentucky Fried Chicken, and not only did he get the chicken down, he even managed to get a biscuit down. I reminded him of what he had said when he was at Lahey, but he still wasn’t satisfied. He tells me, “I want to be able to eat fried chicken without having to swallow down every bite with a glass of milk.” Geez….details, details. I still think it’s a milestone no matter what he says.

Sunday September 9, 2007 10:09 PM

Jim's got a lot of jaw pain from Speigel manipulating his mouth, so he and I are both living on Motrin...him for his jaw and me for my tooth abscess. But since Speigel put the collagen on him his voice sounds WEIRD. You can hear two frequencies resonating at once...a baritone and a tenor. It's like his voice has been pumped through a chorus effect. The last time he had the collagen done he didn't have that going on. I guess it's going to have to "break in". No difference in the eating yet, though. But he did manage to put on two pounds. Got to look on the bright side...his old suit will fit him for this years' Christmas party.

Thursday September 6, 2007 9:46 PM

Jim had to report to Thomas Jefferson Hospital this morning at 9:45, so we got there on time, and we waited and waited and waited. I wasn't expecting Dr. Speigel to start on time in the first place because he's always late. They finally take Jim back about 11:30. The nurse tells me the procedure will take about an hour and then Jim will spend another hour in recovery, so I just head down to the family waiting room and sign in, then find something to do for awhile. I headed out for some lunch, I make some phone calls, walked around the block a couple of times, and at 1:00 I'm leaning against the wall in front of the hospital chatting on the cell and Dr. Speigel passes me on the street. I'm thinking that Jim must be finished, so I catch up to Speigel in the lobby and say, "Are you done with Jim yet?" and he says, "Oh, I'm heading up to get started on him now." So much for starting when they took Jim back, right? I headed to the family waiting room again and told the nurse at the desk, "Don't bother trying to update me....I already passed Speigel on the street." Let me tell you....the whole surgery waiting room experience brought up some awful flashbacks for me.

One nice thing I noticed about Thomas Jefferson...they don't just have one surgical waiting room. Something that had really bothered me about Lahey was the whole waiting room situation. When Jim had his tumor out it was a very serious surgery involving three doctors and a whole day. I didn't know if Jim would live or die, or have a stroke, or wake up brain damaged, or have serious physical problems, etc. But Lahey stuck ALL of the waiting families into one room, so here I was surrounded by families of people getting a bone set in their leg, or getting angioplasty, or having knee surgery. So the mood at that waiting room was bubbly and talkative and very lighthearted because the everyday-type stuff far outnumbered the serious surgeries....okay, not that any surgery is everyday, but you get my point. And the personnel managing the desk, because of HIPPA regulations, was not informed about who was in for what, so here I was a basket case and these workers would just look at me like, "What's the big deal?" And I didn't want to be surrounded by happy-happy-joy-joy people. At Thomas Jefferson they have multiple waiting rooms and the families of the serious cases are put into the "quiet waiting room". Now that's how it should be. But today I kept thinking about the total contrast between this surgery and what I went through back in February and how lucky I was to now be sitting in the happy-happy-joy-joy room. And when my mind would flash back to Lahey I'd shake it off...shake it off...shake it off...and think, "Pam- you're in the happy-happy-joy-joy room now. Isn't that great?"

So I talked to Speigel after it was all done and everything went well. He stretched the throat with the boogie (pronounced "boo-jee"....that word just cracks me up), added fresh collagen to one side of his larynx, and did a bronchoscopy. Jim didn't really have much in his lungs, thank God. Speigel said that we won't really know if the throat stretching worked until three to four weeks from now. And when Jim goes for his post-op visit we'll work on getting him back into Vital-Stim therapy for another sixty days. Speigel will find a way to tap dance around Aetna.

So they let Jim go home today and he didn't have to stay overnight, but he's really, really sore. He couldn't speak at all until about an hour ago, and his voice is going to sound strange for awhile until the collagen breaks in. Speigel said he might cough up a little blood in the next day or so, but we shouldn't worry unless it's more than a tablespoon.

Wednesday September 5, 2007 9:25 PM

Tomorrow is Jim's surgery. Nick and Judy are coming over early in the morning to get Jimmy on the bus for the first day of school, and Jim and I are heading to Philadelphia. Dr. Spiegel is going to stretch Jim's throat and add more collagen to his larynx. Jim's not nervous, but I am a little. After all, our luck has been just wonderful this past year, right? I never take anything for granted anymore. Dr. Spiegel says that this surgery has helped 85 percent of his patients, and it hasn't ever made anyone worse, so we'll see. Every time Jim eats he's gagging and choking now. Wouldn't it be nice if that went away?

And if the timing just couldn't get any better...I've got a horrible abscess in my tooth and need between one and three root canals. One's a definite. Dr. Drain's not sure about the other two yet. Tuesday morning I woke up looking like Marlon Brando in the Godfather, but only on one side of my face. It's spread into my sinuses now, and even though I'm taking antibiotics they're not helping very much. So I see the specialist on Monday. I couldn't go any earlier because Jim's got his issues.

Oh, and we still didn't win the Mega Millions.

Jim also wanted me to let everyone know that he spent two days this past weekend cleaning out and organizing our garage. He installed shelves and a cabinet and bike hooks...the whole nine years. Now I can get my car in there. He'll be reminding me of it for the next two years.

I just thought I'd mention this too. A lot of Jim's doctors have made the assumption that he's not back to work yet. Man- if that were the case we would have been up the creek by now. All he needs is his mouth to talk and his eyes to see and his hands to type....that's it. Oh, and his brain to think...yeah- forgot about that. So if anyone's wondering...yes- he's working.

So wish him luck tomorrow. He's been waiting for this for a long time.

Friday August 24, 2007 9:27 PM

So I have more energy now and here's the camp story....

Jimmy's been going to Liberty Lake Day Camp up in Columbus. This is his second year. Last year Jimmy thought it would be fun to hide and the camp had to go into lockdown mode until they found him. I wasn't that crazy about the place because I didn't feel they really had a handle on how to deal with little kids and I didn't think the counselors were really watching them well. I think they spent most of their time socializing with one another while the kids ran amok, but since Jim was sick this year I didn't have time research another place so I sent Jimmy anyway. I could tell the director didn't really want Jimmy back but my money is green so he shut up about it. He was happy to take my $3900.00.

Now, Jimmy is 6. He's not a hitter unless someone hits him first. At the beginning of camp while Jim was in the hospital for his c-diff I get a very indignant call from a counselor asking me if we've taught Jimmy that hitting isn't right. Duh. What did she think? I told her, look- three guesses and the first two don't count...I'm at my husband's bedside in the hospital and I don't have time for this silliness. I found out the next day that the "incident" she was referring to was when a kid stole Jimmy's Harry Potter magic wand he made in arts and crafts and Jimmy grabbed it back and hit the kid over the head with it. The summer's been fraught with several incidents of this nature, and Andy's had a real attitude with me. Then I find out that Andy brought in professional wrestlers. Professional wrestlers? Oh, THAT's gonna help the hitting thing a whole lot. The piece de resistance was last week during Ugly Shorts Day. At the end of the day they set Andy's shorts on a flagpole and lit them on fire. Jimmy saw the ashes and was scared to death because he thought they set the shorts on fire with Andy IN them. Now, I thought the burning of the shorts was funny, and I'm sure the older kids did too, but Jimmy was so traumatized he wouldn't talk to me the whole evening. I called the camp to tell them that Andy needed to go see Jimmy the next day so he'd know Andy was o.k., but they had no respect for Jimmy or his feelings. They just acted like Jimmy was a "weird" kid. The last straw was early this week when Jimmy got punched by another kid and he punched back, but Andy calls me loaded with attitude and gives me a hard time about Jimmy. Well, I blasted him with a tirade. Andy has made remarks to me in the past about it being too "hard" for his counselors to use any incentives for good behavior. Well, one of the things I told Andy was, "You want an EASY job? Go fry french fries. YOU chose this profession. Boo hoo hoo." And then I told him to lose my phone number. The next day, Jimmy's walking with his friend Gabriel when an older kid comes up to them and starts whaling on Gabriel, punching him many times until Gabriel's nose was bleeding. Jim crawled between the big kid's legs and socked him in the stomach, and told me, "I showed him what it feels like to get punched." I asked Jimmy where his counselors were when this happened. He told me they were playing "Nuke 'Em", whatever THAT is. You know damn well that if the big kid got in that many punches before the fight was broken up then no one was watching these kids. Needless to say, Jimmy's not going back there next year.

Now for Jim. He went to the otolaryngologist in Philly today. Dr. Spiegel's not going to do an alternate test in place of the manometry that didn't work. He's just going to do Jim's throat stretching surgery. He goes for his pre-op testing next week, and the surgery is scheduled for September 6th. Jim was practically skipping home. We both can't wait. But Dr. Spiegel did warn him that he may never be able to eat everything he could before all this happened. He says, though, that he has an 85 percent success rate with this surgery.

Tuesday August 21, 2007 9:17 PM

Yes, yes, yes....I haven't posted in awhile, but there's not much going on, other than I ripped Jimmy's camp director a new one, but I'm too tired tonight to go into that tonight so I'll save that one for another day.

I had my "real" appointment with Dr. Kozuch last Monday....not this past Monday, but the previous one. Now I feel like there's an apple in my throat and every time I swallow, the food is moving around the apple. It's beyond uncomfortable. I used to have a problem like this years ago but back then it felt like a grapefruit, so I guess this is an improvement....my fruit is getting smaller. I took drugs for it for many years but those drugs have been pulled from the market. The last time I had a gastroenterologist he told me my only other option was surgery, and I said, bullshit....I'll get the drugs I need from Mexico. So that's what I've been doing. Since I've been on the bipolar meds, though, I haven't had an issue and I was able to drop the Mexican meds...and then came c-diff. That sounds like a song lyric....And Then Came C-Diff...So tests are in my future. Oh, and I also got copies of my records from my old gastroenterologist to bring along to Dr. Kozuch because she had asked to see them. After perusing them I discover I have a 2.8 cm cyst that showed up in a scan from 2003....that no one bothered to tell me about. So now it's 2007 and the thing's had four years to fester. I wonder how big it is now? Well, I look at it this way....it can't be that big of a deal. I'm still here, right?

After Dr. Rivera was unable to do Jim's manometry test we were supposed to hear back from Dr. Speigel about an alternative test. We have heard nothing, and at this point I'm too tired to call. Jim has an appointment this Friday and we can find out our next steps then. I also need to get a hold of the out-of-network dentist that Dr. Drain sent Jim's panoramic x-ray to because I need to get that x-ray back. We have to bring it to the appointment Jim has at the end of the month with the new specialist who's IN network.

Jim's still coughing up crud. He's using his nebulizer treatments from time to time to help with the breathing but he's not doing it as often as he should.

Saturday August 11, 2007 12:35 PM

So here's the latest in chronological order.

Monday night was my last flagyl dose for the c-diff. I was feeling o.k. until Wednesday morning when the diarrhea started again. That was the worst day for it to happen because I had to go to Princeton for a meeting at 10 o'clock. I stole a dose of Jim's flagyl and was able to make it, but felt terrible. At noon I called Dr. Kozuch's office and left a message for her nurse. She didn't call me back. I thought, well- maybe she's off on Wednesday so I'll wait until Thursday. I just continued to take the flagyl three times a day to keep the c-diff at bay. Leaving the house to go anywhere is the scariest thing for me now, so I keep flagyl in my purse.

Jimmy also got suspended from camp for a day for punching someone, so Wednesday he was home. Jim had to work from home to keep an eye on him. I wanted to make sure that Jimmy didn't have a fun time at home, because that would defeat the purpose of the suspension, so I came up with the idea of making him clean the house all day. If he's going to be home then he's going to work all day. He was to make the beds and dust all the furniture that he could reach and vacuum the whole house. Jim said he did a really great job and was all proud of himself. When I got home from my meeting Jimmy was vacuuming the rug in front of the door with the hand tool. I don't think I accomplished what I set out to do because Jimmy had a great time. Well, at least he knows how to clean now. I was out of ideas at that point to keep him from hitting people so a friend of mine who has a boy suggested putting a rubber band on his wrist and when he gets mad he can flick it. We tried that Thursday and Friday and it seemed to work.

Thursday morning I called Jim's pulmonary doctor, Dr. DeBoer. He had said if we didn't hear back from him by Thursday to give him a call. Turns out he wasn't in the office on Thursday. Now, if he wasn't going to be in the office, why did he tell me to call him Thursday? That's doctors for ya.

Friday morning was Jim's manometry test in Philly. I felt terrible when I got up...just terrible. I'm nauseous and dizzy and crampy and still have diarrhea, especially in the mornings. Thank God Jim's parents came in the morning to take Jimmy to the bus because I don't know how I would have done it. I dragged myself along with Jim to his test. While we were on our way to the train station we got a call from Dr. DeBoer. Jim does not have to be admitted to the hospital. The only bacteria they found in his lungs was the regular stuff in the mouth- no staph. Thank God, because with me feeling sick I didn't know how I was going to handle it by myself.

Then we got to Philly and Dr. Rivera couldn't do the test on Jim. She tried several times, but no go. They do the manometry by sticking a soft tube up your nose and down your throat and then making you swallow. The probe is supposed to measure the pressure at various parts of your throat. The way Jim's bone structure is in his nose stopped the tube from going down, so she had to give up. She said this happens in about 1 in 20 people, so aren't we lucky. She'll call Dr. Spiegel and he'll have to come up with another alternative. Dr. Rivera said that an endoscopy is probably the best bet, but Jim will have to be asleep for that. While we were on our way out of the building Jim said that since Dr. Kozuch's office is right down the hall, and she never called me back and I'm feeling so lousy, we should stop in and see if she could talk to me. I have an appointment Monday morning and was going to wait, but Jim insisted, so that's what we did. After we waited about 45 minutes she came out. Turns out she never got my message. She told me to call her on her private number from now on, and gave me another prescription. This is the powder stuff that you mix with a drink and it's supposed to bind with the c-diff and flush it out of your body. It's very clunky taking this stuff because you have to fit in two doses a day and not within two hours of taking any other medicine because the powder will bind to anything in your system and flush it out...including your medicine. Turns out I've taken this before, about 15 years ago when one of my doctor's thought I might have a problem with excess bile production. But back then the stuff was very gritty and only came in strawberry or chocolate flavors. Now it's smooth and citrus flavored, so it's sort of like Tang. I don't know if it's a coincidence or what but I feel much better today. I'll bet that Jim will have to go on this too because once he made his step down in flagyl dosage he's not feeling that great either. I have SO had enough of us being sick. I've read that it can take up to a year to get rid of this c-diff crap. Literally. Haven't we been through enough?

Monday August 6, 2007 9:53 PM

We got a couple of donations envelopes from Lahey Clinic in the mail the other day. I think what I'll do is send them some boxes filled with contaminated poop and say, "Here's your donation. You can have your c-diff back."

Jim had a regularly-scheduled follow up appointment with the pulmonary guy last Friday, which I thought was good timing since he's still got this problem with the cold and he's still coughing up crud. I was thinking that the doctor might admit him, so I was waiting for the phone call. Jim called and said, "What are you doing Monday?" I was holding my breath. "Why?" I said. He said he had to report to Kennedy hospital on Monday morning for another bronchoscopy so the doctor could suck the crud out of him again. So that's where we went this morning. I got Nick and Judy to come get Jimmy on the bus and we headed out. I am so sick of hospitals.

Jim reported there at 8 a.m. and he got registered, etc., etc. Then they called him back to the same-day surgical unit at 9. We were waiting in one of those little prep rooms for awhile and then they took him back. They told me the procedure would only take about 15 minutes. I'm sitting there reading my book...my latest read is something I picked up at the Thomas Jefferson University Medical School's bookstore the last time Jim was in the E.R., "Netter's Gastroenterology." I find it very interesting. I hear a nurse come onto the floor and say, "So eight's being admitted? Eight's being admitted?" and my eye scans the numbers above us....one, two, three, four....oh SHIT....we're in eight!. Then the nurse comes in and tells me to wait back in the outer waiting room. I'm waiting and waiting and when Dr. DeBoer comes out I'm expecting him to tell me that Jim's staying, but that's not quite how it went. He showed me pictures of Jim's larynx before and after. He explained to me that when your larynx is not working right your right lung tends to fill up because of the way the bronchial tubes are positioned....the right one is a straight shot down from the larynx, the left one's tubes are slightly turned. Jim's right lung had been completely filled with fluid and it had come up so high is was bubbling around the larynx. This had basically started with the cold, but since Jim still can't fully control his own spit, at night when he sleeps the secretions just drop right down into the lung. He got Jim all cleaned out, and he's sending a sample to the lab. If the sample comes back positive for antibacterial resistant staph again, then he'll call Jim to be admitted, because the only drug he can give him that will work on staph and not interfere with his c-diff infection is intravenous vancomycin. I told Dr. DeBoer....look....Jim's scheduled for a manometry study this Friday at Thomas Jeff. It's necessary he do that test so that he can get back into swallow therapy again and so that he can get his throat stretched. If I have to reschedule that test it will only delay his swallowing progress and it will just delay getting him the help he needs to manage those secretions, and we'll only wind up back at Kennedy again. It's a vicious circle. He understood the need to get him in for that manometry and said to call him on Thursday. If Jim has to be admitted he'll let us go to Philly for the test, then stop at Kennedy on the way home and Jim can check in then. So we'll see what happens. If I were a betting woman, I'd say there's pretty good odds Jim's going back "inside".

I told Jim to please cut this shit out. I'm sick of hospitals. When he got home he seemed pretty with it and stood there talking to his parents and made himself a bowl of cream of wheat. Then he slept for the rest of the day. When he woke up tonight he didn't remember anything that happened, so I had to explain it again. I picked him up a small MickyD's cheeseburger which he managed to get half of down, in between making choking noises and spitting up phlegm. So gross.

I take my last dose of flagyl tonight and I'm scared to death to leave the house now. I can tell my digestive system's still not "right" but until I have another attack there's nothing I can do about it. I have to prove to the doctor that the c-diff's not out of my system. So I bought myself a bag of Depends. Yeah...that sounds gross, but I'm not going on any long drives without them. I said to Jim tonight..."Look what we've been reduced to. You're sick and I'm wearing Depends. Did you ever think it would come to this?" It's so romantic.

Wednesday August 1, 2007 10:48 PM

Now Jim's got a bad cold, and of course Jim can't just catch a cold....he catches the "creeping crud" like my mother says. Monday he was throwing up phlegm. Dr. McAndrew gave him some nasal spray and cough medicine and I think he'll live. She couldn't give him anything stronger because it will interfere with the flagyl he's taking for the c-diff. So he just has to sweat it out.

My poor digestive system is kicking my butt. I'm o.k., but not "right"....you know what I mean? The flagyl makes me queasy from time to time and I'm afraid to go anywhere for fear of another poop apocalypse. I keep a towel in my car now. If it happens again I think I'll just park the thing in Camden and hope someone steals it.

And here's a funny thing...I was at the dentist yesterday and she dropped a big dollup of amalgam in my right eye. Now, who the hell does that ever happen to? It felt like a burning poker at first. Dr. Drain panicked and flushed my eye out. When I got back to the house I was running around like a nut...."Eye drops! I MUST find eye drops!" Now it just feels like someone punched me.

A few people have asked me about Jim being back to work. Yes...he's back to work. He's been for a long time, so feel free to call him if you want.

Sunday July 29. 2007 7:49 PM

If you're eating right now, or if you're easily grossed out, don't read this post. I have Jim's c-diff now.

I had an gastric incident a couple of weeks ago and thought, "Oh no....I'm getting Jim's c-diff." Now, I've had inflammatory bowel disease for 20 years and I know what a gastric incident is, but this is no regular gastric incident. I popped one of his flagyl and it went away. So I thought it was odd but just a strange coincidence. Fast forward to last Friday. I'm on my way to Voorhees to pick up Jimmy from the camp bus and I get about five minutes away and all of a sudden my insides are going "snap, crackle, pop...snap, crackle, pop" and I'm suddenly dying. I need the bathroom really, really, really bad. I'm sweating and bopping my leg up and down and doing anything I can not to lose it. I'm waiting in the Stop and Shop parking lot for the bus to get there and I just can't sit there anymore. I run into the store to use the bathroom. I'm still dying when I come out. But there's the bus with just Jimmy on it. The bus had to wait for me. I apologize and hustle Jimmy into the car. I didn't even strap him into his seat. And of course, now there's a lot of traffic. I make it about a mile and I just can't hold it anymore and there's no place to pull over. Even if I had pulled over I would have never been able to walk anyway. I wound up going all over myself. In the half an hour that it takes to go from Voorhees back to Sicklerville I went eight times. Yes- eight times. It's running down my leg and into my shoes. Jimmy's just oblivious to it all, because he's a typical selfish six year old. "Can we have a song on the radio, Mom?" I'm sweating and dying and I yell at him, "No! Mommy's sick! Shut up!" When we get close to home I'm thinking, how in the hell and I going to get into the house without the neighbors seeing me? And I say to Jimmy, "Go into your camp bag and get me a towel." He ignores me. I ask him again more urgently. He tells me, "Why can't you just go in the house yourself and get one?" Now I get my voice up, "Will you PLEASE get me a towel out of your bag! I'll wash it for you!" He rolls down the window instead and says, "Mom...you STINK." Gee...thanks kid. In the end he winds up pulling a towel out. I round the corner and of course this is the day that all of the neighbors are out. And I can't pull the car into the garage because there's too much stuff in there.

He gets out of the car and runs inside and I quickly wrap the towel around myself and RUN into the garage and shut the door. I'm covered from shoulder to shoes in shit and there's a trail of about a dozen spots on the garage floor in a trail. I look like the shit monster from the movie Dogma.



Yeah....this is what I looked like. So I strip on the garage floor and run upstairs to get into the bathtub and it takes three fills of the water to get myself cleaned off. Then I called Jim and told him what happened, and to please watch his step on the way in through the garage. I get changed, and now I'm debating what to do. I know this is c-diff because there is a very distinctive smell to c-diff. O.k, I know that's gross, but it's true. It's not a smell that's immediately recognized as poop...it's more like a toxic smell. But if I take one of Jim's flagyl I'll contaminate any stool sample that's taken to identify the c-diff. But I'm in sooooo much pain. And on top of it, now I'll have to cancel my bacterial overgrowth test for August 10th because you have to be off all antibiotics for three weeks. What to do...what to do. Jim gets home about six and I couldn't take it anymore....I took one of his pills and very quickly found some relief. But now I need to convince a doctor that I need my OWN flagyl, so what to do? Jim paged the gastroenterologist in Philly. Kozuch wasn't on call, but some other dude called back. He said yes- the c-diff can be passed on, but he can't prescribe flagyl without a positive identification of c-diff because flagyl could be masking something else. Who gives a damn if it's masking something else? Besides, we have a lot of experience with c-diff in this household....we know what it is. And when Jim was in the hospital the tests for c-diff were inconclusive....the only person who had it positively identified was his primary care, and that was AFTER he had already been admitted and was being treated for it. Not for nothing, but we're back to this "guy" thing. Jim gets treated, and I'm the hysterical female. So this doctor says I should just hold off taking the flagyl and go to the emergency room. That's all fine and good, but the practical side of this is...I already have a car full of shit. If I DIDN'T take the flagyl, how the hell would I MAKE it to the emergency room? And I know this is not a virus because with c-diff you're not nauseous...you're going like crazy and you're still hungry.

So I clean up the garage floor with bleach and a scrub brush and go out and give the car a cursory cleaning. I feel lousy and can't give it a good cleaning. Besides...that would involve the shampooer and I don't feel like lugging that up from the basement. Then I'm debating....go to the ER or stay home on my couch, but in the end I know I need the meds, so I go. They give me i.v. fluids and are waiting for a sample. Well, I took the flagyl, and that stops the diarrhea. I don't think there's going to be a sample. Now I just have the ass dry-heaves. I keep telling these people, "You want a sample? I've got a couple of garbage bags FULL of samples back at the house. I'll get my husband to bring one over." They ignore me. I was serious as a heart-attack. Then the doctor is telling me that one flagyl won't stop the poop. This is where I wish Jim were here with me because he could have verified that it does...and DID...twice for him. But I didn't want him to come with me because that would have meant dragging Jimmy out and keeping him out until all hours of the night. In the end I got this ER doctor to give me the meds.

Let me tell you something about this 500 mg tablet of flagyl. I don't know how the hell Jim gets the pill down. I can't swallow this thing. Every time I try I'm retching and gagging on it and it gets stuck in my throat. I got the pharmacist to give me double the amount of the 250 mg pills. Oh, and by the way....Jim ate a little pizza this weekend. He had to cut it up but it went down. I think the throat stretching and one more round of Vital stim out to do it for him. I hope.

So Saturday I spent all afternoon shampooing my car. I washed all my clothes....I would have thrown them out but I was wearing my absolute favorite pair of shorts and they don't sell them anymore...Eddie Bauer bermudas and they fit perfectly. So thank you Miele washing machine. I washed my shoes....I washed my bra...but I had to throw my purse in the garbage. So Saturday night I decide to go to JC Penney and buy a new summer purse. Jim's teasing me relentlessly. He grabs this junky little bag I packed up temporarily and holds it on his butt and says, "It's the perfect size to go poop in!" That's all I've been hearing all weekend. As I was cleaning the car he's yelling out..."The inside's supposed to be black, not brown!"

Then Sunday we both catch Jimmy's cold. We can't win. Jim's sitting in the living room looking at Jimmy playing a video game and says to me, "We've had such bad luck. This kid better grow up to be a friggin' nuclear scientist. If he's homeless then that's just not going to be fair."

Thursday July 26, 2007 10:08 PM

Jim saw the gastroenterologist at Thomas Jefferson University Hospital in Phiily on Monday- Dr. Kozuch. She put him on a two month regimine of flagyl. He starts out with a high dose and then will slowly taper off. If the c-diff comes back after that she says there's some charcoal goop that she'll prescribe that binds to the c-diff organisms and flushes them out of the body. If that doesn't work there's vancomycin. She asked Jim why he had his feeding tube removed. He said, "Because I couldn't stand it anymore." She suggested instead of living off Boost maybe he should try to make smoothies. The man actually broke out the blender that night and made some banana-yogurt concoction. She also asked us, "Who's coordinating your care here at Thomas Jefferson?" and I know she was really looking for the name of a doctor with that question, but the real answer is "I AM!"

Then yesterday he had his chest x-ray (looking for any more pneumonia) and his carotid duplex, which is really a sonogram. Remember when Dr. Lombardi had written the script for that? His words were, "Let's freak out the technician." Well, that's just what happened. Jim purposely didn't say anything to her about what he's gone through, and when she got to the right side of his neck he could see she was getting worried...kept going over the same spot...over and over and over...and visibly getting nervous. He heard her say, "I know it's supposed to be here...." That's when he came clean. I asked him, "Well, didn't the massive scars on your neck clue her in at all?" He said that the room was dark so she couldn't see his scars.

Jim continues to eat his strange diet. The only nutrient he's short on is potassium, so I keep buying him bananas, and I keep throwing them in the garbage because no one eats them. I'll buy a bunch and he'll eat one. I haven't really been able to cook the dinners I used to, which I sometimes miss, but whatever I cook he usually finds a way to get something in the meal down in some way. I made cheesesteaks last night and he can take the meat and cheese and onions doused in ketchup without the bread and as long as he cuts it up into tiny pieces he can get some of it down. Tonight, though, I had a yen for veal cutlets. I like mine swimming in lemon juice with lots of salt. He had a hard time with those because of the breading and wound up peeling all of that off. Jimmy and I are getting used to the sound of Daddy choking and gagging all through dinner. He often has to run to the garbage can and cough out what he tried to eat. Tonight was a little scarier than usual because he turned bright purple. At least he's never turned blue yet and stopped breathing.

On August 10th he goes for his manometry study. I go with him to have my bacteria breathing test done. That test has an official name, but I have no idea what it is. Jim will be done in 10 minutes. Mine will take two hours. After Jim has the manometry study he sees Dr. Spiegel on August 24th. Then we'll discuss a new diagnosis code and try to get Jim back into Vital Stim therapy. We'll also talk about having his throat stretched. There's no point in trying to coordinate that with the teeth being pulled. He needs it now and can't wait anymore.

Thursday July 19, 2007 9:25 PM

Well, the dude has c-diff again.

He didn't feel that great this morning, then was complaining about achiness all day. He thought he might be coming down with a cold. I'm thinking, "All this fuss for a cold....typical guy. You think you're achy NOW? Old age is coming quicker than you think, mister. Just wait to see how achy you get THEN." He stayed home and was the King of Mopey. Around 5 o'clock he comes over to me and says he thinks he knows what the problem is....the c-diff is back. He's been in the bathroom three times in the last hour. So I tell him to page the gastroenterologist in Philly right away and try to get some more flagyl out of her. He's got a follow-up appointment scheduled for Monday anyway but he can't keep going in that condition like he did last time. So she wasn't on call tonight but he got someone else on the team to return the page who asked him a few questions and then said one of two things is going on: either he needed to take the flagly for a longer period of time or they might have to try another anti-biotic. Jim stumbled over the name....v-something....van....vuh..., so I chime in, "Vancomycin!" and he says, "Yeah! That's it!". Damn, I should have been a doctor. But I'd be the first person to fall on the floor watching a surgery...I'd probably barf....so that's not for me.

So I picked up his drugs tonight...they're double to dosage for double the amount of time. I'm going to hurry up and schedule his manometry study before he's off the drugs and God forbid gets sick again. I've read that some people can take a year to get this crap out of their system.

Wednesday July 18, 2007 10:00 PM

Jim's pretty much back to work now. He's working this crazy shift where he gets on the helpline from 7 to 8 a.m. to support the Keasbey warehouse because they're on summer hours now. Then he hops in the shower and goes into the office. Once in awhile when he has a doctor's appointment he works from home. Now we're in the process of slowly rescheduling all the procedures he missed because he had the c-diff and was in the hospital. He got his carotid duplex (which is a kind of sonogram of his arteries) and his chest x-ray rescheduled for next week. After that I've got to get him in for his manometry study in Philly. That's where they're planning on checking the muscle stength in his throat. From that the ENT will come up with a bullshit diagnosis to get him back into another 60 days of vital stim therapy. He was also supposed to get his teeth pulled last week, but that got put off too. Since his local dentist who was to make the overdentures bowed out because she was in over her head we've got to wait for a new pre-determination of benefits to come back before we can schedule that. We need to know exactly how much this is going to cost us to make sure we have the money. The day he gets his teeth pulled he'll get his throat stretched. Maybe between that and the teeth and more therapy he'll be able to eat again.

Here's a sample of stuff that Jim can eat. He can;t have any bread or anything that's the consistency of bread because he can;t push it down. So he can scoop the contents out of an egg roll. He's had success with the following things if he douses them in sauce and cuts it up into little pieces: chicken, pastrami, the meat from a cheesesteak, meatloaf. He eats a lot of Cream of Wheat. Anything to drink. Chocolate milk is one of his favorites. I found these Godiva coffee/chocolate things at the supermarket. He can have macaroni salad and macaroni and chesse, but not regular macaroni with sauce. He can have mashed potatoes. Today he ate some egg salad. And he drinks lots and lots of Boost. Believe it or not, when he had his blood work done the only nutrient he was lacking was potassium, so I keep insisting he eat a banana every day. I also got him vitamin pills. But part of the problem is that he can only put teeny tiny little pieces of stuff in his mouth. So he can;t really taste anything. Think about it. When you eat you usually take a good sized bite, so you can taste your food. If you could only take a little nibble at a time you wouldn't really taste it. These things that he's eating are helping sustain what little weight he has, but they're not going to help him gain back the 40-plus pounds he lost. You can see his bones, especially the ribs across his back. I'm afraid to snap him in half if I hug him.

And I, who have been putting off everything medical I need to do, actually had a dentist appointment last night and about five minutes before I leave I remember that I now have a mitral valve prolapse and I forgot to tell the dentist I’m supposed to pre-medicate before having any dental work done. I used to think that was bullshit but Dr. Altimore was pissed at me the last time I went there and told him I got my teeth cleaned without telling my dentist this little detail. “It only takes one time to get endocarditis and die, you know,” he said. I was going to keep my mouth shut and go to the dentist anyway, because I live dangerously….I even use the public restroom without putting toilet paper on the seat…but I decided in the end I’d better say something. The way my luck is going I’ll be the one in a million it will actually happen to. So much for getting my teeth done. I had to reschedule.

I also need to make a little announcement here. Anyone familiar with Howard Stern? You know how his first wife used to bitch and moan about him talking too much about their personal lives? Well, that's what I'm getting from Jim. It's part of the story....it's part of the drama...and without it the story is just not the same. So let me back up a little. Many people who have read this have told me I should try to put this into a book and sell it. I used to write a LOT as a kid...plays, songs, poetry, short stories, and I have many an unfinished novel....a million stories in my head...but now I spend all of my time writing memos and letters to vendors. When I went to see my Aunt in Texas we were talking about the blog, but she doesn't have internet access and is not computer savvy, so I thought it would be nice to take the whole thing chronologically, dump it into a Word document, and send it to her so she could read it. Then that got me thinking. Maybe with some cleaning up, and some elaboration here and there where I had gotten a little too dry and medical, I just might be able to market this thing. What I printed for my Aunt was already about 57,000 words and 105 pages. But apparently getting your shit published doesn't work like it did in the old days. You can't submit your work to a publisher directly...you need a literary agent, and many of those won't work with you unless you're an established writer. See the irony there? But there's many that will look at a first work. If what you have fits their genre and they think they might be able to sell it, then they give you editing pointers and shop it for you. So I've found a professional literary agents' organization, gotten a list, and I've started to submit it. I've gotten two rejections so far, but there's three hundred more agents to go, so I'll keep plodding away. What have I got to lose? Nothing.

So as for the Jim-sensitivity thing, I'll keep this blog to the facts. The drama is going in the manuscipt. There's alreaady a lot in there that was not gone into in a major way on this blog. For instance, remember the asshole Jim was referring to when he came to in the ICU after he coded? That drama is in the manuscript. There's also a lot more to the insurance company fight than what was put here. There's also a lot more personal drama than what you'll see here. I asked Jim yesterday, "What are you going to do if this thing gets published? There'll be a lot more people seeing this than just a handful of friends." He said he'd be o.k. with it then because I'd be making money. We'll see. I've probably got a snowballs' chance in hell but it's worth trying. There's got to be SOME positive side to this, and I haven't won the Mega Millions yet.

Thursday July 12, 2007 10:15 PM

The drugs Jim got for his c-diff seem to be working, so that's good, but I think his mental state has deteriorated a little bit. He seems more irritable again and doesn't want to do anything. Not that he did very much BEFORE, but he just seems off. And his speech is definitely slipping and he now makes strange sucking noises every now and then...it scares me sometimes because it sounds like he's dying. Apparently every week the nerve sensations in his jaw change....I guess as different nerves are healing and waking up...and since he's missing so many teeth that doesn't help. Now that he's feeling better we have to go through the process of rescheduling all his tests...his chest x-ray for the pulmonary guy, the carotid duplex for Dr. Lombardi the vascular guy, the manometry study for the ENT (this he really needs so that they can come up with a new diagnosis code so Jim can continue therapy, plus all his pre-op bloodwork for the teeth pulling. On top of it, Jim's local dentist, Dr. Drain, who was in charge of making his overdentures, has decided after speaking with the maxio-facial surgeon, that she's in over her head and has referred Jim to an overdenture spcialist, which means pre-determination of benefits will have to be done over again. What Jim really is looking forward to is having his throat stretched because he thinks that will really help him eat. That's supposed to be done at the same time as the teeth. Ugh. This is going to take a long, long while.

Last week Jim was really a grouchy animal. He and I very rarely fight. We may have a disagreement, but that's not the same thing as a fight. I can probably count all of our fights in the last seven years on one hand. But MAN, I had had it with him on the 3rd of July. Since the 4th was on a Wednesday and we both had to work the next day, plus Jimmy had to get up early for camp, I thought it would be a good idea to take Jimmy to the fireworks Tuesday night. They were having fireworks in Haddonfield where we had gone last year. But Jimmy had a dermatologist appointment that night at 7pm that we had waited three months to get, so I figured if we got out of there at a decent time we'd head over to Haddonfield. So that night I tell Jim my plans, and he's huffing and puffing and ROLLING the eyes. Now, even when Jim was tumor-less he was never one to go anywhere except the couch, but he never gave me a hard time about the fireworks. But I had had it this time. I was not going to drag along an unwilling participant. Jimmy and I would go ourselves. Now Jim's still rolling his eyes and sighing and says, "I'm putting my shoes on!!!!" I told him, no- stay home. It will be the best of both worlds...you can do what you like to do which is sit on your ass all night, and Jimmy and I will do what we like to do. Well, Jimmy and I didn't get home until quarter to eleven that night and here's Jim wiping up the kitchen counter and fuming. I think he never expected me to actually leave without him. Well, later he apologized. I thought maybe he'd think twice now before being a giant stick in the mud.

Saturday we had beautiful weather here...not too hot...a nice breeze blowing...so I thought it might be nice to take Jimmy down the shore for the night. We're about 45 minutes from Ocean City, which is just south of Atlantic City...and Jimmy's never been to the beach or seen a boardwalk. So I mention this in the afternoon, and Jim is o.k. with it....not enthusiastic, but o.k. At 5 o'clock I tell Jim I'd like to leave in half an hour. He doesn;t budge off the couch, and at 5:30 he's asleep. Well, screw it. Jimmy and I went. And Jimmy had the best time. Jim missed a lot of firsts that night...Jimmy seeing the ocean and playing in the sand...Jimmy walking the boardwalk...and Jimmy, who's normally scared of everything, riding an adult roller coaster. So we had our adventure. And Jim felt bad about it, but I'm not sitting around anymore coaxing him into doing things. He tells me that his Dad never took the kids anywhere, so that might be where it comes from. But if you felt that your own parents never took you anywhere and you recognize that, BREAK THE CHAIN for Christ sake.

So I'm getting a little sick of it. It would be nice to do something once in awhile as a family, you think? Especially now that Jim is alive and the tumor didn't kill him. You'd think he'd want to live a little and wouldn't want to miss these times with his son. Today we both went to the shrink and I asked him to please tell Dr. Shah that he might need a boost in medication. But last week when I was really pissed off I told Jim to see if Dr. Shah had any asshole pills to go along with his Lexapro. I guess there's no such thing as asshole pills.

Jim also bought some crazy t-shirts from this website called T-Shirt Hell. He got one for him that says "I shaved my balls for this?" I think he should wear that to the hospital when he gets his teeth and his throat done. And he picked one out for me that has this 1950's-style picture of a man holding a cleaver. It says, "You can't have manslaughter without laughter." He said it seemed to fit my personality. He couldn't say exactly why. But I wore it to the shrink.