Happy to be Home

So much happier since he's come home. Neutrophils at 3,850; hemoglobin at 9.8. Temp only went to 100 degrees tonight and he feels OK, but very, very tired. Long nap today in his own bed. Enjoyed a visit from Willie, Kath and Dan and some delicious Vietnamese take-out from them. Early to bed and hopefully a good night's sleep. Looking forward to a visit from Andy and Jeanie tomorrow. Barbara

Not Home Yet

Jim's neutrophils are at 940 which is very, very good, but he ran a fever again this evening. All day the doctors were saying that he would probably go home tomorrow morning. So who knows what they'll decide for tomorrow since he's running a temp again. I'm thinking it will be very good for his mental health to let him come home. He's obviously frustrated--wants a few good days at home before he starts the 4th cycle of chemo next Friday, June 5th. Barbara

Longing for Home

A good day today until 7:00 pm when he spiked a temp and became nauseated. Nurse medicated him for the nausea and he felt real sleepy after that--said he's going to bed early. Neutrophils were at 200, hemoglobin above 10. A nice visit from Pat, Heather, and Jodie from Arizona. We were hoping he'd come home tomorrow, but now because of fever we don't know. Barbara

A little better

JIm better today--ANC (neutrophils at 70)--hemoglobin at 9.1--no fever over 100.8 degrees--his spirits a little improved, still very tired. Barbara

Memorial Day

Remember with gratitude all those in the military who sacrificed that we may be free!

Another day of fevers. Jim exhausted and depressed. Although he did have a pretty good morning--walked in the hallway with Kathleen--hemoglobin at 9.0--neutrophils at 500. I asked the doctor to check him before I left tonight at 11:20 pm since Jim's thinking is slow. He examined him and felt that it was all due to sleep deprivation. He has a wonderful nurse on tonight who knows him well and she promises to keep a close eye on him and try to get him a good night's sleep. IV antibiotics continue. We are so fortunate to have such wonderful, caring and attentive medical care. We wonder about the 45 million people in this country without health insurance who cannot count on being cared for without going bankrupt! Barbara

Information on donating blood at NIH

Jim has been receiving blood at NIH frequently. For anyone who is interested, here is the information on donating blood at NIH. (Repeat information from comments earlier.)
Thank you. Barbara

http://www.cc.nih.gov/blooddonor/

Location:The National Institutes of Health (NIH) Blood Bank is located in the Clinical Center on the NIH campus at

10 Center Drive-MSC
1184 Building 10, Room 1C711
Bethesda, MD 20892-1184

Phone:(301) 496-1048

Email: nihbloodbank@mail.cc.nih.gov

Blood Transfusions x 2

Another day of fevers--they wanted to give blood all day (hemoglobin 7.3) but were waiting for fever to go down first after treating with Tylenol. They finally started the blood transfusion at about 7:45 pm--first unit of blood almost done by the time Susan, John, and I left at 9:15 pm. Second unit will begin after infusion of IV antibiotic. Jim was much more himself today. Had a restful night and walked several times in the hallway. He even went outside for awhile, but we had to get a wheelchair to get him back to his room due to exhaustion. He is again neutropenic as expected (neutrophil count at 850). Joe also visited today for many hours. All in all a better day. His appetite remains good. Barbara

Fever Continues

Jim's fever stays high, mostly he just wants to sleep. Susan and John came down from NJ to visit him. Napped frequently, a bit depressed I think and very weak. Probably will get a tranfusion tomorrow as hemoglobin at 8.2 today. Barbara

Out of ICU and "La-la Land"

Well Jim was much better today, seemed himself and getting out of bed--was tranferred out of ICU onto the oncology unit. I couldn't believe how much better he looked. Ann and I had a great visit with him today. He's still getting the antibiotics IV and all day his temperature was normal as were his electrolytes. As I was leaving him tonight at 8:45 he was being moved again--but this time to a private room (YEAH!)
However....... I just got a call from him at 10:00 pm telling me his temperature spiked to 104.7 degrees. Here we go again!!!!!!! The usual routine is they will draw more blood cultures, looking for the offending pathogen (germ), and contact Infectious Disease team to see if any additional antibiotics are in order, wait 48 hrs. for the results of cultures, continue whatever antibiotics and IV fluids are ordered and hope for the best. He's not neutropenic yet, but is expected to be by tomorrow. Okay you bloggers, lets all pray together! The interesting thing is that Jim says he doesn't feel bad! Love to all, Barbara

ICU

Sorry I didn't post anything last night, but was too tired. Jim spent the night in the Intensive Care Unit. Yesterday morning he got very, very shaky and weak--had had several night sweats--was peeing every 10-15 minutes large amounts--had not really had a good night's sleep for a week. I called my brother-in-law, Rick, to help me take him to NIH--he could hardly walk. Even though his temperature was below normal, they are treating him as if he has an infection (called it a "cold fever"). They gave him lots of IV fluids since his electrolytes were off, some steroids to ease the Prednisone withdrawal, and two different IV antibiotics. When he continued to sweat profusely, had rigors (shaking and trembling so that the whole bed would shake), his heart rate continued to race at 135/minute, and was very restless and confused they admitted him to ICU. The infectious disease team was called in and two more IV antibiotics were added and drugs were added to reduce the rigors. They inserted a PICC line and after several more major sweats, his heart rate lowered to 104 and he became calm by 9:00 pm. I spoke with his nurse at 5:30 this morning and she said that he was stable, had about 5 1/2 hours of sleep and she was going to let him sleep til he woke up. She said that because his electrolytes are still off they will probably keep him in ICU for at least another 24 hours. Many thanks to Pat, Rick and Michael for staying with Jim and I yesterday and to Erin who went at 9:00 pm to stay with her Dad til God knows when last night.

I just spoke with Jim (8:30 am) and he sounds himself again and typical Jim Fay style is apologizing all over the place for what he put me through. You gotta love him! Barbara

End of Chemo Cycle 3

Home hopefully for the next two weeks--Docs and Nurse Practitioners are very upbeat--infection in mouth has resolved itself with no after effects. I want to thank all of you for your thoughts and prayers. I am lifted up by the realization that so many of you are in this with me. Thanks. Jim

Start of Cycle #3

Yesterday we met with the senior doctors and nurse practitioners to evaluate Jim's progress. They were ecstatic re the results of chemo to date. They ordered some new meds to handle most of the side effects. Jim is looking forward to great results from the third (of six) cycles.

Today Jim went to NIH at 8:00 am to have a PICC line inserted, then received his Rituxin, run very slowly intravenously. After that he had a bag with 3 chemotherapeutic agents hooked up to an infusion pump which he wears as a fanny pack. Each bag will run for 24 hrs. and will be changed daily by the nurses at NIH. On day five (next Tuesday) he will receive a slow drip of Cytoxin. Thanks to all the drivers who volunteered to take him to NIH each day and to the good friends who are providing wonderful meals. And thanks also for all the comments, prayers and loving concern. We are truly blessed in our family and friends!

I've noticed that he is already feeling the effects of the large doses of Prednisone (240 mg. per day) in that his appetite and energy level have increased. He can't seem to stop doing things. I had to stop him from building a fence around the arbor where a robin has nested to protect her 4 blue eggs from predators! I'm afraid he is going to collapse if he doesn't slow down.

Love to all, Barbara

All is Well

Everything's okay. Jim is trying to eat more to gain strength. We were shocked yesterday when he only weighed 179 lbs. He ordered his new eye glasses today and went to the endodontist to check on a tooth that has been bothering him. Blood numbers are good. All is well. Barbara

Mother's Day

Happy Mother's Day one and all! Jim is tired, but gaining strength by eating a little more each day. Tomorrow we go in to NIH for blood work. Saw all our kids and grands today. Barbara

Home Again

Jim came home today--ANC at 1700--those shots of Neupogen really work--and temperature normal. Needless to say he is delighted to be back home again and in his own bed. He was getting pretty stir crazy. He'll have 5 days before he starts on Cycle #3. Barbara

Update

Jim started to have diarrhea last night and a culture showed it to be C. Difficile again (for those of youwho tuned in to the blog recently, that's a nasty germ that puts out a toxin and causes abdominal cramping and diarrhea). So he's in isolation and was seen by the Infectious Disease doctors today. They don't think the C.Diff caused the fevers all week--that probably was what they call neutropenic fever. Anyway so far today no fever(hope it stays that way). He's on medication by mouth for the C. Diff and will probably stay on it long term since this is the second time he's had it. His neutrophil count is up to 410 (hurray!) Kathleen (and "New Kid") were here to visit and she told us that her C-section is scheduled for June 6th @ 11:00 AM. Kath and I took Jim outside to the courtyard for some fresh air (first time in ages that we didn't have rain. Barbara

A Little Better

Just a quickie--Jim's neutrophils at 180 today, but still running fevers (peaked at 103 degrees). They added another IV antibiotic (Vancomycin). His spirits are better, says he's thinking more clearly today. Still tired. He had a "lovely visit" with Ann today and later tonight Joe stopped by on his way home from a conference. Barbara

Two Nice Stories

I'm home today until 3:00 pm--daughter-in-law Ann Harrison is with Jim today until then. This morning I went to mass at Missionhurst--Shirley and Frank Marvin had arranged a healing mass in Jim's honor and I was surrounded by the most wonderful group of friends that anyone could ever ask for (our "extended family", AKA "The Group"). It was as if I were an infant and was being lifted up and held close by all these caring, loving people! God truly works and dwells within us. Cheryl Keane was there and gave me such hope (which I will convey to Jim) when she told me of her fight against stage 4 Hodgkins Disease more than 20 years ago. She, too, was treated at NIH and related how they would "take her to the brink and bring her back up again" during her chemotherapy. We need to have that same faith.
When I got home there was a message from Jim on our answering machine. And he said, "I had a wonderful night last night--I had an apparition and it was you in your youth. And then I woke up at midnight and saw it was Erin in the room! What an angel she was!" Well, Erin, I guess it's true what you always hear--that you look just like your mother. Thanks all and love, Barbara

Not much change

Another day of fatigue and discouragement. Neutrophils still at 10 and fevers continue--Jim knows he has to be free of fever for 24 hrs. and neutrophil count at 500 before they let him go home. On a higher note--he was moved to a private room tonight so is hoping for a good night's sleep. Sally came to visit this evening and Erin tells me she is going tonight. And he had a lovely visit from a hospital chaplain, Ellen, who was just wonderful and helped to lift his spirits! Barbara

Sleepwalking????

Certainly a better day than yesterday. As you know from comments his neutrophils were at 10. We're both still wearing masks. His temp did rise again to 104.2 this afternoon and since he's been on IV antibiotics for 4 days they are asking for an Infectious Disease consult. He reported to me that he slept very well last night, but when I asked the nurses they said he had had a very high temp in the night, sweated profusely when the fever broke, then found him walking in the hall in his underwear. I guess that night nurse really did give him something to knock him out!!!! My sister Pat visited with us the entire afternoon and into the evening and Linda McCullagh stopped by for a visit. Both gave him a real lift. Barbara

Nadir

Last night Jim received two units of blood which raised his hemoglobin, but prevented him from sleeping most of the night. So today he was extremely exhausted but couldn't sleep. He became very anxious when he heard that his neutrophils had hit zero so I had to ask his nurse to call the doctor and ask for an order of Ativan (an anti-anxiety medication). His tempeature never went above 101.5 today, so that was an improvement. He called me a short while ago when I got home and said the night nurse was going to give him something that will "knock him out" and Jim sounded happy for the first time today. Lets hope he gets that much needed night's sleep! Barbara

A Little Better Today

Still in hospital--temp only went to 103 degrees today. Getting great care, including IV antibiotics. Neutrophils at 110 and falling (expected), so he's wearing a mask and continues to get the daily Neupogen shot which increases neutrophil production. Hemoglobin at 8.4 so he will probably get a transfusion tomorrow. Spirits are good. Many "power naps". "We'll get through this", he says as he drifts off to sleep. God, how I love this man! Barbara

Back in the Hospital

Well it was nice while it lasted but Jim's temperature went up last night and again this morning so I brought him in to NIH. While we were there his temp shot up to above 104 degrees so they are giving him IV antibiotics and keeping him there for a while. Please continue to pray for him. Barbara

A Lift Before Prednisone Downer

Jim had a great day yesterday, even wanted to go out to lunch. We called Shirley and Frank Marvin and they were free and met us at the local Afgan restaurant. Had a great time. Since his neutrophils were still high, we seized the moment!
Today he went in to NIH for blood work with daughter-in-law Sally and then had an eye exam in the pm (lost his prescription glasses). By the time he got home he was exhausted--a combination of being off the Prednisone (last dose was Wednesday night) and the effects of the Chemo. His temperature remains normal (Hurray!) and he's been sleeping for at least 4 hours. I'm about to wake him up for dinner. Thanks to all for all the meals, rides, prayers and support. Barbara