Slow Progress

Jim's had a fair week. Jim's diarrhea got worse (with a fair amout of blood in it) and then better, but we're waiting to hear from his gastroenterologist about that. His agitation and sleeplessness at night has improved somewhat with the addition of a new drug called Risperdal (a very small dose to see if he can tolerate it). However, the home health aide did not work out on Tuesday night with Jim yelling for me most of the night (took me 45 minutes to calm him down!!!). So we are back to using our kids to take turns with night duty--bless them. Physical therapy is already having an effect with Jim ambulating much better and he seems stronger. Starting to eat a little more also. Have a good weekend everybody. Barbara

Hanging In

We're hanging in there. Jim still not sleeping. Erin stays tonight, Ann last night, Kath the night before. Tomorrow night we're starting with Home Health Aides--we'll try them for 6 nights and then reevaluate. Tomorrow a physical therapist will come (3x/week) and hopefully we'll hear from the Home Health Aide that will come 3x/week to give him a shower. Medicare covers the daytime stuff since it was ordered within 3 days of hospital discharge, but not the nighttime. Thanks for the visits in the daytime folks as it gives me time to run errands (car inspection, library, grocery shop, etc), but tomorrow I'm going to be really decadent and go for a massage--Pat coming over. Thanks to Rick for today and Carol and Fred for yesterday and all you nighttime angels. Barbara

Not There Yet

Well, maybe Jim's allergic to home, because after two reasonably good nights in the hospital he was discharged on Wednesday and Wednesday and Thursday nights he hardly slept at all. Seems to get very anxious and agitated at night. So I called Dr. Zimmet reporting some possible side effects of the new drug. He discontinued it and arranged a psych consult for this afternoon. The doctor was very supportive and sympathetic with all Jim has gone through and feels that staying off any new drugs for a while might be in his best interest. That leaves Jim with nothing to help him to sleep, so the doctor said he could increase his Zoloft (an anti-depressant) which he has been taking for the past 14 years at a very low dose. The feeling is that his body is used to it and maybe just increasing it a little will relieve some of his anxiety. We're hoping for the best. Thank you Sally for spending the night last night to help Jim and to YJ for his offer to stay tonight. God bless all of our family and friends who have been so wonderful and caring. Barbara

A Crazy Night

Turns out the Xanax was playing havoc with Jim's mind and he became very, very agitated last evening. Had to call 911 for an ambulance to take him to nearest Emergency Room--Arlington Hospital where his doctor practices. After many tests and neurology consult it was decided that Xanax was not the medication of choice for Jim and he was put on Seroquel (GO PAT HANRAHAN !!!! ) Michael spent the night with him as he was admitted to the hospital and reported that he slept 4 hours with the Seroquel. He was so much better today and will be discharged tomorrow. And the beat goes on.............Barbara

A Busy Weekend

Think we finally hit upon the right dose of medication for Jim to sleep better. The first night (Friday) Jim took Xanax--we started at a very low dose (0.25 mg) and titrated up as Dr. Zimmet advised. Turned out 1 mg. was too much for Jim and unfortunately he was also hit with a new bout of diarrhea at 1 am. He was extremely weak by 7 am--couldn't get out of bed--poor Dan had to practically carry him to the BR. Blood pressure was 88/58. Spoke with the docs at NIH and they felt in his weakened state that he had had too much Xanax and advised letting him sleep it off and call them at 2 pm. He finally settled down at 10 am and went into a deep sleep. I woke him up at 2 pm for another evaluation. This time I was able to get orthostatic B/P's on him and there was very little change between lying down and standing up so we consulted with the docs again and they felt he was not dehydrated and had overdosed on the Xanax--advised not giving him more than 0.5mg in future. He gradually gained a bit of strengh during the day. Thankfully, Joe spent the night as the diarrhea continued and it was still hard for me to get him up myself.
Susan and John paid us a surprise visit, arriving late Saturday night and staying until this morning. They took night call for me last night and I got another good night's rest. Since each day Jim is gaining strength (in spite of the continued diarrhea) I think I am going to go it alone tonight. Immodium is at last slowing down the "D", so we look forward to more normalcy. Thank you Dan, Joe, Susan and John and to Maureen for dinner last night and Lynn Smaldone for dinner on Friday night. We love you all. Barbara (and Jim)

We're Done!!!!!!!!!!!

At Jim's reevaluation today at NIH, the doctors decided that 5 cycles of Chemo was enough. They feel that he had an excellent response and they now want Jim to regain his strength and weight and they will check his blood levels at two week intervals and then do CT scans and a bone marrow biopsy on August 24 and another evaluation (they call it restaging) on August 27. We are delighted! Now we have to figure out how he can sleep better at night (we'll see Dr. Steve Zimmet, his long time internist, about that tomorrow). He has an appointment next Tuesday to be measured for a super-duper brace for his hip to keep that from coming out. I want to thank Erin, Mike, Ann, Rick, Sally, and Dan for all the overnights, and Joe and Young Jim also--it gives me a full night's sleep with one of them on call. I'm hoping we can solve the sleepless nights problem soon so I don't have to impose on them. Thanks to all of you for your prayers, meals, rides, visits, support--oh yes, and to you, Maureen for sitting with Jim yesterday. Love you all, Barbara (and Jim)

Update Since Home Again

I see I'm getting very lax about this--haven't written for a while. Jim was discharged last Thursday--pretty weak and needs assistance to ambulate. His appetite was just returning when "BANG"--the big "D" strikes again!!! I'm convinced it's the chemo doing this to him, but NIH always wants a specimen to check for infectious diarrhea. We went in to NIH yesterday (Sunday) and spent the day while they drew blood and gave him a liter of IV fluids (electrolytes off). His numbers are all good and temp is normal, so we're just waiting for Thursday's evaluation and recommendations. I've been super tired getting up frequently in the nights so the kids are taking turns spending the night (Joe all day yesterday, Erin 11pm til 7 am last night, Mike will be tonight). Thanks everyone. Jim rests a lot during the day, but if anyone wants to visit Tuesday or Wednesday, just call me and I'll let you know when's a good time. Thanks for caring. Love, Barbara

Home Again/Hip Intact

Jim was discharged from the hospital yesterday and is doing pretty well at home. My sister Mary left yesterday and sister Susan arrived same day from NJ. It was great having help. Mike came from work to help get Jim home--he's very nervous about dislocating the hip again as you can imagine. His bloodwork of today showed hemoglobin of 11.2, neutrophils at 13,000 (those Neupogen shots really work well!!!), and now his platelets are normal again. Next week on Thursday we will have the evaluation with the whole team at NIH to weigh the advantages and disadvantages of continuing with the 6th cycle of chemo or stopping now after 5. Stay tuned. Thanks to Dick Payne for staying with Jim at the hospital yesterday morning and to YJ for doing the same on Wednesday afternoon. Love to all you good people. Barbara

Hip out again, Then in again

When I went in to NIH yesterday I found Jim receiving 2 units of blood again (very pale and hemoglobin at 7.9) and he greeted me with the news that his left hip had dislocated again. He had been trying to get out of bed urgently (remember the diarrhea?) to go to bathroom, the four side rails were up so he "had to sqeeze through a very small space, and I must have moved my leg a strange way, and it went out!" "Jim", I say, "Why didn't you call the nurse?" "Well I didn't want to bother anybody." !!!!!!???????!!!!!! It was not as painful as last week since it was on the edge of the cup part of the prosthesis and they were able to keep him comfortable with drugs overnight. This morning they imported an orthopedic surgeon from Suburban Hospital, took him to the OR around 9:30, put him under and did a closed reduction. He is now pain free, afebrile (no fever), hemoglobin at 9.2, neutrophils at 710 (yesterday they nadired at 40), so things are looking up. The hospital hired a "sitter" for nights (7pm-7am) and we are trying to cover days with family and friends so that he doesn't get out of bed alone (he gets confused when his fever is up). Everyone has been so supportive. YJ took the afternoon off work and stayed with him til 7 pm today and I went home and took a 2 hour nap.
I have the feeling that they might discharge him tomorrow or Friday since his temp never went above 100 degrees today. Thank God for that. Barbara

An Inpatient Once Again

Jim spiked a high temp last evening and is now an inpatient at NIH again. They immediately started him on two different IV antibiotics. His neutrophils are at 100 so he is very vulnerable right now. I stayed with him last night and he didn't sleep much due to the return of horrendous diarrhea. My sister, Mary, arrived from NJ just in time to help me get him to the hospital and go thru the admission process with us. Erin came later, bringing his orthopedic equipment and she took Mary home at midnight. Mary is with him now as I catch up on my rest--we decided it best to take turns as this might turn out to be a long stay. Who knows? I don't predict anything anymore as all things are subject to change. Barbara

Quiet Sunday

A pretty uneventful few days. Jim's not strong enough to handle crutches, but a cane and a shoulder to lean on help a lot! He keeps the knee immobilizer on to remind him not to break the 90 degree rule and the abductor to sleep at night helps as well. He's been nauseated and not eating, but continues to drink fluids and Ensure Plus helps to keep up his nutritional status. He continues to deal with "Chemo Brain" which he HATES, and affects his short-term memory and his concentration. Only one more treatment cycle to go (starts on July 17th)! We'll be sticking it out at home this week since he'll be neutropenic, except for trips to NIH on Monday and Thursday for blood tests and maybe IV fluids. Love you all, Barbara

Jim's Worst Nightmare!

During Jim's first cycle of Chemo back in April he said to me,"Barb, you know what my biggest fear is? It's that one of my hips would dislocate during this chemotherapy." Well last night, right after watching the news, Jim was getting out of bed and his left hip went out! Talk about the trials of Job!!! Anyway the ambulance responded to our 911 call promptly and he was in Arlington Hospital ER by 8:30 pm. Erin and later, Sarah, came to the ER with me. Jim's own orthopedist, Dr. Annunciata, had no trouble manipulating it back into place and by 11:15 pm he was comfortable. HOWEVER, he had had another bout of diarrhea just before and also after the dislocation, so they kept him there to give him some IV fluids lest he dehydrate once again. The doctor from NIH advised he come in the next morning at 8:00 am to evaluate him. So, after getting home close to 3 am we got up at 7am to go back to NIH--home again by 5 pm. YJ spent the night and thank God he did as Jim was extremely weak and needed a lot of assistance to go to the B.R. (that's the loo, you Brits). This afternoon Joe came to NIH to help us home and tonight Mike will spend the night to help. You gotta admit--life is never boring with this man! Barbara