I made Jim wear his "I went to Lahey Clinic to Get My Tumor Removed and All I Got Was This Lousy Sweatshirt" shirt yesterday and the whole place got a big kick out of it. In every department he went to they paraded all the doctors and nurses by him. They also took his picture in Radiology and Infectious Disease for their department newsletters. A table of doctors and nurses came by in the cafeteria. Hey, if you have to have a tumor you might as well get a laugh out of it. The doctors all said he was doing great...even though he can't see it. They gave him a script for Lexapro and insisted he get it filled right away and start taking it immediately. Yeah...I had to fight them tooth and nail for it and now they act like it was all their idea. He has to come back in two months. They want him to heal a little more and then take a new baseline cat scan. Infectious disease also wants to give him a potent drug cocktail to make sure the antibacterial resistant staph gets completely wiped out of his body. But they don't want Jim to take it right now. They want him to recover more. He may have to take the cocktail twice.
We didn't get home until around 11 pm. then Jim took his first Lexapro dose. Now, I don't know if it's psychosomatic or what, but I think the first dose actually helped Jim. He made a 180 degree turnaround today. He woke up pleasant and claims he has a lot more energy, he worked today, and has more of his old personality back. Looks like I won't have to kill him after all. I don't know if it's possible to make that big of a turnaround after one dose, but I'll take it. He still claims the liquid "food" gives him a stomach-ache so he's not using as much as he's supposed to, but somehow he's managed to maintain his weight at 153 for about 10 days now.
And even though he's really only supposed to be using water, he's actually drinking chocolate milk in small sips and it's going down the right pipe. I made him talk to me after every sip to make sure he didn't sound like he was under water, and he sounded clear. For those of you who haven't seen or spoken to him, though, you will be shocked. His voice is hyper-nasal and he's pretty emaciated. His therapist has made him shave all the hair off his face so you can clearly see where he was cut open like a butchered pig...three times. He's having a hard time grasping the fact that when you go through an injury of any kind it takes a long time to feel normal again. Anyone who's broken a bone knows that even though you might be able to walk on the bone after so many weeks it doesn't really feel "normal" for a year or so, and sometimes it's never really what you remember as "normal" again.
Thursday, April 12, 2007
Tuesday, April 10, 2007
Tuesday April 10, 2007 8:34 PM
Well, we're here in Massachusetts. I've been up since 5. Jim had therapy at 8, then we headed out. We made a couple of stops, then when we got up here I stopped at the supermarket to pick up something for dinner for myself. We checked in just before 4 pm. I could have used a nice nap but got my roots done and had a haircut at 6. After this I'm going to collapse. Jim has two appointments tomorrow, the last one at 2:30, so we'll head back home in the late afternoon.
He was pretty good with the food today. He used a can before we left and then another at each of the rest stops. But he's still irritable, and I really blasted him today. He snapped something at me to the effect of, "Well, you said you needed medicine for your bi-polar", blah blah blah and I unleashed a diatribe. I told him, "Yeah- I needed medicine, and I didn't get it for 26 years! And I spent 10 years depressed. You've been depressed not even 10 WEEKS...talk to me in another 9 years. And I did not snap at everyone around me and treat my spouse like some kind of a dirty dishrag. And could I eat then? Yeah, I could, but everything went running out the other end right away. I was AFRAID to eat. I was in the bathroom 20 times a day and sick as a dog! And I didn't have a nice husband at home to help me and push and push to get me treatment! (Note to Greg...I don't mean YOU, I mean Kenny). And the medicine they put you on may not even help you. You may have to try different medicines, you may have to have your dosage adjusted a few times. It could take a couple of MONTHS to get everything right. In the meantime, you have to TRY to find something to help you pull yourself through. I went back to school to pull myself through. What are YOU going to do? And I can't have you continue to talk to me the way you do in front of Jimmy because then you're sending a message to him that it's o.k. to talk to Mommy like that. If you're going to keep doing that then you're just going to have to stay somewhere else until your meds kick in. You might not have even made it to Jimmy's kindergarten graduation if you left that tumor in, never mind his high school graduation. Aren't you glad you're going to be here to see that? And you've only been going to therpy for ONE WEEK now. What did you expect to happen in a week? You're already making progress. No one said to you this was going to be permanent!" Then he's bitching that now when he sticks his finger in his ear his mouth tingles. Well, first, what are you sticking your finger in your ear for? And second...what are you complaining about? That means the nerves are coming alive again. That's a GOOD thing!
That snapped him out of it for the rest of the day. Maybe I'm just going to have to stop being nice and go off on him on a daily basis. He has made some progress. He's now graduated to practicing swallowing spoonfuls of water, and when he speaks afterwards he doesn't sound like he's speaking under the ocean. That's a far cry to what he was sounding like a week ago. But the therapist is all over him to use his voice as much as possible and KEEP HIS HEAD UP instead of drooping it down all the time. He's also got to lay off using hand signals instead of speaking. The voice therapist sent me with a note for the ENT. "Has he healed enough to try to produce a Mendelsohn manuever?" I'd love to know what THAT is. It sounds like a gymnastics move. Apparently it has something to do with your larynx. This I gotta see.
He was pretty good with the food today. He used a can before we left and then another at each of the rest stops. But he's still irritable, and I really blasted him today. He snapped something at me to the effect of, "Well, you said you needed medicine for your bi-polar", blah blah blah and I unleashed a diatribe. I told him, "Yeah- I needed medicine, and I didn't get it for 26 years! And I spent 10 years depressed. You've been depressed not even 10 WEEKS...talk to me in another 9 years. And I did not snap at everyone around me and treat my spouse like some kind of a dirty dishrag. And could I eat then? Yeah, I could, but everything went running out the other end right away. I was AFRAID to eat. I was in the bathroom 20 times a day and sick as a dog! And I didn't have a nice husband at home to help me and push and push to get me treatment! (Note to Greg...I don't mean YOU, I mean Kenny). And the medicine they put you on may not even help you. You may have to try different medicines, you may have to have your dosage adjusted a few times. It could take a couple of MONTHS to get everything right. In the meantime, you have to TRY to find something to help you pull yourself through. I went back to school to pull myself through. What are YOU going to do? And I can't have you continue to talk to me the way you do in front of Jimmy because then you're sending a message to him that it's o.k. to talk to Mommy like that. If you're going to keep doing that then you're just going to have to stay somewhere else until your meds kick in. You might not have even made it to Jimmy's kindergarten graduation if you left that tumor in, never mind his high school graduation. Aren't you glad you're going to be here to see that? And you've only been going to therpy for ONE WEEK now. What did you expect to happen in a week? You're already making progress. No one said to you this was going to be permanent!" Then he's bitching that now when he sticks his finger in his ear his mouth tingles. Well, first, what are you sticking your finger in your ear for? And second...what are you complaining about? That means the nerves are coming alive again. That's a GOOD thing!
That snapped him out of it for the rest of the day. Maybe I'm just going to have to stop being nice and go off on him on a daily basis. He has made some progress. He's now graduated to practicing swallowing spoonfuls of water, and when he speaks afterwards he doesn't sound like he's speaking under the ocean. That's a far cry to what he was sounding like a week ago. But the therapist is all over him to use his voice as much as possible and KEEP HIS HEAD UP instead of drooping it down all the time. He's also got to lay off using hand signals instead of speaking. The voice therapist sent me with a note for the ENT. "Has he healed enough to try to produce a Mendelsohn manuever?" I'd love to know what THAT is. It sounds like a gymnastics move. Apparently it has something to do with your larynx. This I gotta see.
Monday, April 9, 2007
Monday April 9th, 2007 7:16 PM
We're heading back to Massachusetts tomorrow for Jim's follow-up appointments on Wednesday...one with infectious disease and one with the ENT department. I'm also getting my roots done at 6pm tomorrow at the place that colored my hair while Jim was in the hospital.
I spoke with Jim's ENT nurse today and I told them, look- Jim had TWO psych consults while he was hospitalized and both recommended he be on anti-depressants, yet we were not sent home with any. I didn't push it when we left because Jim had a good attitude, but that attitude lasted about 2 hours. I can't get him into a shrink in NJ until early May, and we're desperate. He needs something NOW. So after a lot of going back and forth they're going to send him home with a script for Lexapro. THANK GOD! Let's hope it works. He went to therapy today and actually did some work this afternoon, but the look on his face is just sad, sad, sad. He needs chemical help to get through it.
As for me, I'm exhausted. I can't even afford to get sick because who will take care of everybody? I stopped by Polito's house tonight to bring him some PDA's and felt like I was going to pass out in his foyer. That's not good.
I spoke with Jim's ENT nurse today and I told them, look- Jim had TWO psych consults while he was hospitalized and both recommended he be on anti-depressants, yet we were not sent home with any. I didn't push it when we left because Jim had a good attitude, but that attitude lasted about 2 hours. I can't get him into a shrink in NJ until early May, and we're desperate. He needs something NOW. So after a lot of going back and forth they're going to send him home with a script for Lexapro. THANK GOD! Let's hope it works. He went to therapy today and actually did some work this afternoon, but the look on his face is just sad, sad, sad. He needs chemical help to get through it.
As for me, I'm exhausted. I can't even afford to get sick because who will take care of everybody? I stopped by Polito's house tonight to bring him some PDA's and felt like I was going to pass out in his foyer. That's not good.
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