Monday, October 23, 2006



I didn't see Jim yesterday because I did not like being the target of his anger and frustration. I went this morning because I wanted to see what the DRs are doing.

Jim's arms and chest are bruised beyond belief. Some of the bruises are weeping and have been covered with tape. Jim is having nose bleeds and has open bleeding sores in his mouth. All of this is because his platelet count is so low--he can't clot (except of course in the veins in his calves, where we didn't want them).

I asked the nurse to read the chart since Saturday afternoon. Apparently the hematologist/oncologist had ordered an abdominal MRI to look for cancer, but Jim refused the procedure. I went to Jim, explained why the MRI is important, and the DR re-ordered the MRI. It will be later today (6 pm).

Jim is now too anxious about the MRI to do anything. He wouldn't eat lunch. He just keeps asking when the test is. He is claustrophic. Jim is a control freak, and he has no control right now. I tried to get the procedure moved up, but no luck.

Nothing more has been said about putting the Greenfield filter into his vein to catch the clots from his legs. It's likely that with his lack of clotting he would not be able to survive the procedure. One of the GI specialists had wanted an upper endoscopy last week, but the GI guy today said absolutely not.

I thought Jim was in bad shape after the last hospitalization, losing 45 pounds. He is SOOOO going to decompensate on this one, with complete bedrest, and him not eating or exercising.

Jim's blood pressure is good. His temp is only slightly low. He's not as cold as he was.

The infectious disease guy said he didn't think the cause of Jim's condition was spontaneous bacterial peritonitis because the culture of the fluid taken from Jim's peritoneum showed no infection. But the GI guy said that is impossible to say because they weren't able to draw peritoneal fluid until Jim had been on IV antibiotics for 2 days.

I asked the GI guy where the low platelet count is coming from. He said they weren't really sure, but that it could be an infection in the bone marrow. Also could be reaction to the meds. Also could be just a condition of the cirrohsis. (Of course the hematology guy wasn't there to ask). I asked whether another platelet transfusion would be in order. (Jim had one on Saturday.) GI guy said Jim's platelets had come up from 10 on Sunday to 11 today, so we should wait and see. (Normal range is between ~140 to 415.)

All the DRs seem to be waiting for a "pronouncement" from the hemotologist/oncologist. It seems they all think/hope it's some kind of cancer,
so that there is no hint that they did not do all they could do. And I'm not saying there's not a huge amount being done. Well, maybe someone should have called me when Jim refused the MRI, but besides that, and the dietary staff who is feeding him crap, I have no fault with what the folks there are doing.

There was a business card from the hemo/onc guy on Jim's beside table. I will call him tomorrow, to see what he has to say.

I spoke by phone on Friday to Jim's Neuropsychologist. Jim was supposed to have a followup visit tomorrow. The DR said he would pop in on Jim, and maybe chat with his hospital-based GP, without having a formal consult. He understands how Jim's current condition likely has really set back his mental condition. The DR was so nice, and also concerned about my state of physical/mental health. He also was empathetic with my blubbering.

Right now, there is no way to predict when Jim might come home, if ever. But I'm starting to be able to think about him not coming home (or taking me to Europe as he promised) without completely falling apart.


The track on the radiation treatment room door was fixed and I got my X-rays this morning. I should be able to get my first radiation tomorrow. Because of my 6-week long bout with constant diarrhea (which my GP thinks is stress over Jim), I get an abdominal CT scan on Thursday. It will be with contrast, meaning I have to drink that barium crap.

Turns out that while I get 28 treatments to my chest wall, I get only 25 to my upper lymph nodes. (The axillary basin--armpit--is included with the chest wall site.)

I am going to have to find some time to get back to physical therapy soon.


Alice said...

Sorry everything sucks so bad right now. SEnding you love and lots of hugs.


{Steve Rapaport} said...

Hugs and more hugs!

sabina sez hi!