Saturday March 24, 2007 9:46 PM

He got sprung today, after many, many hours of waiting. But then we had to go to CVS and wait 40 minutes for all his meds, so he sat in the car. I had to hear the usual guff from Aetna via the CVS employees.....some of his meds might not be covered....they have to be pre-certified...blah, blah, blah. I told the woman, look, I don't care if it's covered or NOT...the man needs his meds. Just fill them regardless. In the end I don't know what she was making such a big deal about...the most expensive prescription was around $64. Big deal.

So we finally got back to the hotel around 4 o'clock. We're staying here tomorrow because the visiting nurse is coming to inspect his feeding tube, then we'll head home Monday. I think the man needs one full day of rest before hitting the car for a 6 hour drive. I really don't like the way he sounds, either...he's hacking like someone with bronchitis and spitting out a lot of crap. I keep looking at him sideways and he keeps insisting that he's fine....if he felt bad he would tell me....and I told him, no you wouldn't tell me, because you don't want to go back to that hospital. But he was coughing like that for the last several weeks in the hospital and he doesn't have any fever so apparently no one except me seems to think it's a big deal.

And the man who said he loves me and would die for me still won't take a shower for me. Maybe tomorrow. I've got to go hang outside now because I can't smoke around him anymore.

Friday March 23, 2007 9:49 PM

Well, the poor guy still didn't get out of here, but it had nothing to do with him or his condition. There were a lot of orders to be written...for his food, supplies, follow-ups, etc., and his doctor was in surgery all day and didn't get it all done.

Since I thought this afternoon that he WAS getting out, I packed up same clothes for him, then I was planning on dropping off packages at the UPS store for Miele stuff going out, was going to stop at the drugstore to get my prescription for beta blockers filled, pick up some gauze and other supplies that I'm going to need for Jim, then head to the hospital and wait for them to discharge him. I left the hotel and went to the UPS store, then realized I had forgotten to take my meds this morning. I thought, no problem, the bottle's in my purse, I'll take it now. Then I realize that no- the bottle's back at the hotel in the drawer. Now I had to go back and take my meds, then I headed out to CVS. I get to CVS and realize my prescription is back at the hotel, so now I turn around AGAIN and go get my script. I'm losing my mind. As I write this I realize my beta blockers are out in the truck so now I've got to go get those.

I went up to the hospital to see Jim and after awhile the nurse told us to forget it...he's not getting out today. Maybe Saturday or at the worst, Sunday. So we'll see. I ran into a woman here who said when her mother was discharged she got a call at 6:30 a.m. to come and get her, and they didn't get out until 11:00 p.m. That better not happen to us.

If he gets out tomorrow I may not leave until Monday to go back to NJ. It depends on how he feels. We'll just have to play it by ear and go one day at a time.

Thursday March 22, 2007 8:55 PM

They didn't come to get Jim for his PEG tube (I think that's what they call it) until 1:30 today, and he didn't get back to his room until 4 o'clock. He was all dopey on "loopy juice" so I knew he'd never be discharged today. I was planning on seeing him tonight after he slept it off but he called me at 6:30 asking "Where are you?" so I headed out. He's in some pain because- hell- they punctured a hole in his stomach...I guess anybody would be in some pain. They also put some kind of sutchers into it that have to stay in for two weeks so it felt like his whole stomach was stapled. I asked the technician about what to do in case the thing falls out. He says, "Call your Primary Care Physician." I told him, come on...a primary care physician can't put this thing back in. Should I call Jim's vascular surgeon back home? Or should I take him to an emergency room? The guy still says to take him to his primary care physician. Boy, these guys at Lahey sure have a hard on for primary care physicians. I'll just ask the vascular surgeon what to do when we get back home. Hell, how's the primary care physician going to help? By sticking a tongue depressor on it? Duh.

So Dr. Tannas stopped by tonight. They're going to start feedings with it at 10:30 pm and see how he does. If all goes well he can be discharged tomorrow. I said to him, "Boy, you're sure going to be glad to get rid of that bitch Mrs. Primiani, aren't you?" And he just smiles. I said, "See...he's not even arguing with me!" And Dr. Tannas looks nervous and says, "Oh, I'd NEVER argue with YOU Mrs. Primiani." Jim told me they're all scared of me here. And I really don't understand that because I've never gotten nasty with these guys or raised my voice or pitched a fit....I just stay on them all the time to make sure they keep me informed. What's wrong with that? If it were THEIR wives laying in that bed you know they'd do the exact same thing. So Dr. Tannas told Jim he should get up and walk around so he doesn't develop a blood clot. I took him for a walk all around the ward.

There's a crazy screamer on the other side of the hallway. She kept yelling, "Nurse, nurse, help me!" REALLY loud, over and over again. Jim tells me she does that EVERY night, all night long. He goes by the nurses desk and says, "One flew over the cookoo's nest I guess," and the nurse laughed. I asked the nurse, "Hasn't she been here for a long time?" and the nurse said, no- that was ANOTHER one that got discharged. This one is inconsolable. Jim said, "Want me to go help her? I'll tell her to shut the f--- up." I asked the nurse how the patients around her can STAND that and she said luckily the two in adjacent rooms are both hard of hearing. The nurse says to Jim, "Now, you know what REAL suffering is, and you don't scream like that." Boy, you got THAT right.

So I told the nurses to give me plenty of notice when they plan on discharging Jim because I don't want them to put his ass out on the street before I can get over there. Hopefully it will be tomorrow. If not, it should be sometime over the weekend. We'll have to come back in two weeks for a bunch of follow-up appointments.

My father-in-law is not very accepting of the fact that Jim has to go home with a feeding tube. I told him I might need him again to stay at the house when we come back for Jim's follow-ups. He says that maybe Jim will be eating by then. I told him I don't know...no one can predict that. He keeps asking me what the doctors say. Finally tonight I told him, "Look, that's like asking the doctor when I'm going to die. They can make a prediction, but they don't KNOW, do they? No one can give us any guarantees." I think the point finally sunk in when I put it that way.

Wenesday March 21, 2007 9:35 PM

Couldn't sleep AGAIN lsst night, so I had to pop a valium. I normally never have a problem sleeping....I could sleep on the headboard at home, but I guess it's all the stress.

They wound up not putting in Jim's stomach feeding tube today. Part of it was a paperwork screw-up in the way the order was written, but he's definitely having it done tomorrow. Then the nurse will show us how to use it. I told him to call me as soon as they get there to give the instructions and I'll run right over.

I got Jim set up with a center near our house that does this Vital Stim therapy. This is supposed to provide quick results. It involves placing electrodes on your neck to get the muscles and nerves stimulated again. I'm confident he'll make progress. After all, if he was able to swallow after surgery number two then he can't have any kind of permanent damage. And right now he's at a good weight for his height (he really needed to lose 20 lbs before he went for the surgery, so it's a good thing I made him fat beforehand or he'd look like a concentration camp victim right now) but if he continues to lose weight I've got to ask if there's any way I can pump some fattening stuff into that feeding tube. Like a milk shake. He won't taste it, but at least he'll keep his weight up.

So I went to see the voice pathologist today and gave her all the contact info for the center near our house. They need a whole bunch of paperwork that Dr. Dolan's office has to provide. I also got Jim approved for 60 visits through Aetna. Dr. Dolan thinks that will be more than enough. I told the pathologist...hey I don't waste any time. You told me he needs this therapy and I got him set up. She asked if I wanted a job there. But hell no...I couldn't be around all those sick people and people with throat cancer all day.

So Jim may be getting discharged tomorrow. If not tomorrow, then probably Friday. I'm going to keep him here through the weekend just to watch that nothing's oozing, bleeding, hurting, swelling, etc. Then we'll head home. He still can't speak well and can't get back on the helpline for awhile, plus he's got to do his therapy several days per week, so it will be awhile before you guys see him in the office, but he's anxious to get back to work doing something productive so he's going to be doing stuff for his department from the house while he goes through his therapy. He should have his Miele e-mail back in operation by Monday if all goes well. Besides...he can't go back to the office until he gets some new clothes. He has nothing to wear that fits him right now except sweats.

As for me, the psych office here is going to make sure I have someone to see near the house before I leave here, this way I can get my meds without having to call Massachusetts. I also got prescribed some beta blockers today to slow my heart rate down. I just need to carefully monitor myself that they don't make me depressed. If they do, I'll have to drop them and let my cardiologist in NJ come up with a gameplan. Of course, I can't get in to see him until May 8th.

So in the end I really didn't expect to take Jim home in this condition. I really thought I was going to be bringing him home somewhat closer to what he was before we left, but in the end I'm just glad he survived, so I have to be thankful for that. He had one hell of a ride, and there's more to go. Time and therapy should heal the rest. Had I not been on these bipolar meds I might have been a lot more freaked out and depressed about it. My mother even says I'm too calm now. She overheard one of my conversations with Jim's doctor while I was in the middle of answering two cells phones at once and said to me, "You're TOO calm!" But what else can you do?

On a funny note, we had to evacuate the hotel this evening because all the fire alams were going off. I grabbed my coat and my purse...I was debating grabbing my computer but it would have taken me awile to shut it down, and then I'm thinking it's probably a false alarm anyway...screw it...let me just get out of here. So I head down the stairs because you're not supposed to get on the elevators in case of fire and as I'm heaading down I'm smelling smoke, then I'm getting worried...is this REAL? Damn...maybe I should have grabbed my computer. There's fire trucks outside, the whole nine yards. Turns out some bonehead put their popcorn in the microwave too long and it burned. After 20 minutes or so they let us go back in.

Tuesday March 20, 2007 8:03 PM

Well, there's good news and bad news today.

I went to talk to Dr. Jewell today. The entire 10th cranial nerve is now out of service, but he said not to worry about bowel function or heart function...there's enough other nerves going to those organs to make up for the loss of the contribution of this 10th nerve.

Jim also went for his barium swallow test. He passed as far as larynx function goes, but his problem is the muscles that push the food toward his esophagus. He did o.k. with this before his third surgery, but now those muscles need work. If he eats anything viscous like pudding or ice cream or any solid food, it would pool in the back of his throat because he doesn't have the muscle power to push it down, so he's in danger of aspirating the food when he breathes- not because the laynx won't close. So the suggestion was made to take the feeding tube out of his nose, and install a feeding tube directly into his stomach. Then he needs to go for several weeks (perhaps six- that seems to be the average) of special therapy to stimulate and work on those muscles. Centers that do this therapy are near our house. He'll have to go home with the feeding tube in his stomach. They feel he'll heal better at home anyway.

I asked Jim how he felt about this. You'll remember back when this started he told me he'd rather have me put a bullet in his head than go home with a feeding tube. But he told me now that they managed to get this big ass tumor out of his neck, and he's still alive, so he'll accept the feeding tube. And they don't expect it to be permanent, so he'll just have to do his therapy and hope one day he can have a pizza.

So they're putting the tube in tomorrow. All of the nurses here say that he'll find it to be pretty comfortable. The only bad thing is this liquid stuff doesn't satisfy your hunger, so I feel bad for him, but what else can we do? We've just got to go with the flow. At least he can get out of that place and have a real shower. And we can get back home.

In the meantime, the therapist let him practice his swallowing technique with Italian Ice, so at least he got to enjoy SOMETHING. But since he can't take in enough food by mouth right now he won't be strong enough to heal properly.

Monday March 19, 2007 10:13 PM

I had horrific trouble falling asleep last night...I was so anxious about Jim's procedure today. So I debated popping a valium, but that stuff clogs you up something awful, so I debated for awhile...sleep...clogged up...sleep....clogged up. I decided that sleep was more important. Woke up at 5:45 and was wide awake then, so I got up. Jim calls me at 7:00 and tells me that they moved his room again...he's in the basement now. I keep telling him there's no way he could be in the basement, but he's insistent. So I humor him and say o.k., then call the nurses' station to check. They say, no, he's still here. 10 minutes later Jim's calling me again, "You're worried about me?" he says. Of course, I tell him, because you're losing your mind. My mother thinks he's just having flashbacks to his prior surgeries. I don't know...I think it's just like the nurses' said: hospitalitis. You're here too long and your mind plays tricks on you.

So at 8:30 when the ENT clinic opens up I call to check what time his procedure is going to be. They don't know yet, but promise to call me when they know more. I really want to be there for the procedure, partially because Jim can't speak well yet and may need someone to speak for him, and partially because if he goes on his own his mind is so screwed up I'll never get the real story out of him about what happened and what the doctors said. I sit here and try to do some work in the meantime but can't concentrate on ANYTHING. At 9:15 I get a call that they're going to fetch him now and I should come on down. I got there about 9:45 and there he is, sitting in his wheelchair in the ENT clinic. I met the doctor doing the proceudre...Dr. Anderson. Apparently this is his specialty. So to remind everyone, since half of Jim's larynx will not move, and never will because the nerve has been cut, the plan is to inject collagen into the side that won't move so that the other side can touch against it, and he can eat again without inhaling his food. They bring me into the room, and it's crowded with all the other ENT doctors who want to watch the procedure, because this is not the kind of thing you see everyday. I asked Dr. Anderson about how long this collagen lasts. After all, if you get collagen in your face it doesn't last forever...will Jim have to come back periodically to get this re-done? He tells me there's two different kinds of collagen. He uses one with a more "bony" property and it should last forever. They start the procedure and make Jim sing an "E". He sang an E pretty good for a guy with one vocal chord.

Now of course, Jim always has to be different. Normally they can just do this in the office, but they discover quickly that Jim has a terrible gag reflex, so Dr. Anderson stops and says he has to do this in the Operating Room and sedate him. And he's going to use the regular collagen instead of the "bony" type. I just sink. Another intubation that will screw up the good vocal chord again? Oh, no, they tell me- this will be quick- we don't do any damage. I tell them, yeah right...I've HEARD that before. He says the only other option is to make a small incision in Jim's neck and go in that way. I tell him, NO! No more incisions in his neck. We don't need any more neck infections! They also tell me that they often run into someone with this gag reflex so it's not unusual. Good God. So they had an opening the the O.R. and they take him right down. Now I've got to wait around again.

I go the family waiting room. And I'm waiting. And I'm waiting. And I'm waiting. I leave for my 11:30 shrink appointment. Then I go back to the waiting room again. And I'm waiting. And I'm waiting. I talk to the nurse there and tell her, Jeez...this was supposed to be a 10 minute procedure, what's going on? I've got visions of Jim having to go back to intensive care afterwards instead of back to his room. The nurse tells me that even though they TAKE you into the O.R. it might be over an hour and a half before they actually START the procedure. FINALLY Dr. Anderson comes out, He tells me everything went great. He used a little extra collagen and built the laryx up extra large, but as the other vocal chord comes down against it it will break it in, so to speak. Kind of like new brake pads on a car. So his voice may take a couple weeks to a month to get to it's strongest point. If Jim becomes less groggy by the end of the day they'll do a swallow test today. If not, they'll wait until tomorrow. Since they used the regular collagen, Jim will probably have to have this re-done in about 6 months to a year, but at that time they'll use the more durable collagen. He also mentioned that he thought of something else toward the end of the procedure but they had already pulled the intubation tube out so he decided not to do it. He may have to stretch Jim's esophagus a little. It apparently also got some damage from the nerve being cut, but if he decides they need to do that he can do it right in his office. So they must stretch the thing like a new pair of shoes. Whatever...I don't care. I just need to get him out of here.

It was two more hours before they brought Jim up to his regular room. He was feeling loopy from the anesthesia but not choking, and not using his suction wand. He says he can swallow his own spit now. But they didn't do a swallow test today. It was 4 o'clock by the time they got him back upstairs. I let him sleep it off, then came back in the evening after dinner.

Now of course his throat is very sore. Well, sure. They practically combed it with a cheese grater. So I waited for the nurse to get him some pain meds and get him settled in for the night, and then I left.

I also stopped by Dr. Jewell's office today. I had said earlier that they had to cut the 12th cranial nerve to get Jim's tumor out. I was wrong...it was the 10th cranial nerve, also know as the Vagus nerve, which comes from a Latin word which means travelling. This sucker looks like a bunch of spaghetti...it branches off all over the place and it "travels" to a lot of places in your body. I know that it crosses through the inner and outer carotid arteries, so I'm assuming that's where they cut it, but I'd like to know for sure. This thing controls part of your colon, part of your heart, a whole mess of stuff. I'd like to know if they cut it before it travels to these other areas of your body or not for the simple reason that I'd like to know what other things to watch out for in the future. And doctors love to show you that stuff. They're all geeks anyway. So Dr. Jewell will be in the office tomorrow and I'll stop by again, or he'll call me.

So I'm confident that Jim will pass the swallowing test. If he can now swallow his own spit, he should be able to swallow food. They were putting him back on the tube feeds tonight so they must not be worried about him aspirating like they were over the weekend. I'll know more tomorrow, hopefully.

Sunday March 18, 2007 8:42 PM

Jim woke me up this morning at 7 a.m. by calling me. "You KNOW it's only 7 o'clock, right?" I asked him. But that's o.k. I'll talk to him anytime. I got up, stomach killing me from the corned beef and cabbage I ate yesterday. They have this really nice supermarket in town...kind of like a Whole Foods or a Kings (how Kings USED to be years ago) that sells ready-made meals, so I've been living off those because the selection at the restaurant here is a little slim. But every year I make corned beef and cabbage and every year I forget how my stomach feels after I EAT the corned beef and cabbage, so I did it again.

I got myself together and went down to the front desk to tell the guys that Jim might be getting out this week...because we're all friends now...and an elderly lady came down to the desk looking for the shuttle to take her to Lahey Clinic. I told her to come on with me...that's where I'm going. Her story is pretty sad. Her husband had bladder and prostate cancer and now has to wear an ostomy bag. They're from Rhode Island. Her husband had told her to go home for awhile and she said that she couldn't go home. What would she do if something happened to him and she was gone? Gee, where I have heard THOSE words before? This couple is in their 80's. To her I was young. Hell, I probably won't even live that long.

When I got to the hospital the nurse told me that Dr. Tannas had been in and had discontinued Jim's tube feedings, but she didn't know why, so I paged Dr. Tannas. I told the doctor, "You're scaring me, Dr. Tannas. What's wrong?" He told me that Jim seemed to have a lot of reflux so they didn't want him to aspirate anything. They're just going to do the COLLAGEN treatment tomorrow. (I said cortisone in my last post, but that was the other "C" thing. He told me they don't know what time they're doing it, but I can call the ENT desk at 8:30 a.m. to find out, and I'm welcome to come along. Jim will be given a swallowing assessment right afterwards and if he passes may be able to go home mid-week. Everyone needs to send out their prayers and cross their fingers that Jim passes and this thing works. They say they're extremely successful in cases like this.

Jimmy and grandparents arrived in the early afternoon, so I met Jimmy down in the lobby. "Mommy, mommy, mommy!" he yelled as he crossed the street without even looking and ran through the front doors of the hospital and gave me a big hug. So I took him up to see Daddy. He was a little scared at first, but then he warmed up. He had to wear a yellow gown to go in so I played it up like he was a doctor. He took a liking to the nursing student, probably because she was cute. Jimmy has an eye for the ladies already. He and Jim visited for about an hour. I explained the best I could why Daddy didn't sound the same because of his vocal chords. I don't know if he 100 percent got it. But he kept repeating, "I really missed you Daddy. I haven't seen you in a week." It's great how kids have no sense of time. After awhile Jim started having some pain in his face where the teeth got pulled, so we left so he could get some rest.

Afterwards Jimmy and the grandparents and I went for an early dinner/late lunch before they hit the road again. They asked Jimmy what the best part of his day was and he said, "Seeing my Daddy." He really misses both of us.

I went back to see Jim again tonight. He's so antsy and just wants to get the hell out of here. He's starting to look gaunt. The nurse showed me how to zero out the scale in the bed, then use it to weigh Jim. She said they're not the most accurate, but according to that scale Jim has lost 25 pounds. But people, don't go on the Jim Primiani diet. I don't recommend it. And have you ever noticed that on EVERY commercial break on t.v. there's a FOOD commercial? Every single one. Pay attention the next time you watch t.v. It's got to be torture for the poor guy. Plus he still can't swallow his own spit so he has to suck it out of his mouth with a suction wand. You also never realize just how much of your own spit you swallow in a given day. I can see it in Jim's suction container so I know....it's a LOT.

So please Lord, let the collagen thing work tomorrow. I know my step-sister in Idaho would say, "It WILL work...you have to practice positive thinking."