Chemo (5th cycle) Finishes

OK, today was the final infusion of chemo--Cytoxin--for the 5th cycle. One more to go!!!! Jim is doing well so far. They gave extra IV fluids each time he went in for the past 5 days and on Friday, when he goes in for a blood test, he will receive more IV fluids to prevent him from getting dehydrated. We're hoping no high fevers this time because that seems to be what causes him to be admitted to hospital. We will celebrate our 49th Anniversary this Thursday and we expect to celebrate at home and NOT in the hospital! Thanks for all your support! Barbara and Jim

5th Cycle

Yesterday Jim started his 5th cycle of chemo--tolerated it well. Today our friend Maureen is driving him to NIH to have IV fluids and have his bag changed. Still tired and weak, a little less wired on the "half-dose" (120 mg.) of Prednisone--he was able to sleep last night. Thanks to Sally for staying with Jim last evening while I went to see Riverdance at Wolfe Trap with Joe, Ann, and Maureen--it was fabulous! Barbara

Good News

Jim's report on his CT scans was very positive. All the enlarged lymph nodes in his pelvis, abdomen and chest have gone down to normal size!!!! Hooray! Thanks for all of your prayers. He will have just 2 more cycles of Chemo as recommended, starting tomorrow the 5th cycle. He is still very worn out, down to 170 lbs., but the diarrhea is over and his appetite is back. Barbara

CT Scan Done/Bone Marrow Biopsy Delayed

CT Scans were done today--should tell us (on Thursday will get report) about Lymphoma's resonse to chemo. But because Jim is on blood thinners they will postpone the BM biopsy (which will tell about the state of his leukemia) til after the 6th and final cycle. Since the diarrhea is still going on the doctor decided to keep him in for the day to receive (you guessed it) more IV fluids. Home by 5 pm--Jim still worn out and weak. Thanks to all the kind offers of help--it's greatly appreciated. And thanks for all the love, caring, and well wishes. Love, Barbara and Jim

Happy Fathers' Day One and All

Diarrhea back with a vengeance!!!! Went in for IV fluids and home by 2 pm. Love to all, Barbara

Jim's Visit to School

For those of you who enjoyed the heart warming story of Jim's visit to the kids he reads to ( Friday 6/12 Blog entry), here's a picture. He's the guy in the ugly hat.

Posted by andy (Barb's brother)

New Complications

Discouraging day--diarrhea's back--they think it's a return of the C. Difficile--maybe the germ became resistant to Flagyl so they changed it to Vancomycin by mouth. Also noticed a lot of swelling in one leg--a sonogram showed that to be a blood clot in his left leg. Now on a blood thinner called Lovenox--one injection each night. On a positive note--Jim's no longer neutropenic. Still planning on the CT scan on Monday (it was rescheduled), but have to check with the doctor on Monday on whether they will do the bone marrow biopsy while on Lovenox. Hoping for calmer days! Barbara

3/4's of the Way There!

We went to NIH today for Jim's blood test and evaluation. He was dehydrated once again and his blood pressure low. After a liter of IV fluids, his color was better and his B/P slightly improved so they let him come home. His electrolytes were good, his hemoglobin at 11.4 and ANC (absolute neutrophil count) at 3,610. So he's once more been brought back from the brink! Only 2 more cycles to go! Barbara

LIFE GOES ON

Jim home and doing OK today(albeit very weak and tired)--slept a whopping 14 hours last night!!! Yesterday was a bit trying for him though. Erin took him in for his biweekly blood tests and his evaluation for fluids in the NIH Day Hospital and they found him in need of fluids, neutropenic as expected, and with a very low blood pressure. So they kept him most of the day trying to get his B/P up and debating whether to admit him or not. They did allow him to come home, but he was truly beat and went right to bed. Nausea during the day kept him from eating very much, but they medicated him for that too. Erin had a much fuller day than expected. She and I had traded places for the day and Finlay and I had a good day together--we went to visit new baby Charlotte and she was so cute with her. Then we picked up Maeve at 2 pm, took Maeve and Callan to dive practice at 2:30 til 5:00, then on to a swim meet at another pool by 5:30 warm-up time, only to leave the pool at 8 pm. (How Erin keeps up this pace I'll never know!!!--and this was without Quinn, whom Mike took to doctor's for a foot injury and then on to a soccer practice with him.) Makes me tired just thinking of it. Barbara

JIM WRITES

SWEET JESUS, MARY AND JOSEPH--THIS BLOG IS THE MOST DEPRESSING TALE OF WOE I HAVE EVER READ! WHY IN GOD'S NAME WOULD ANYBODY READ IT? OK, I KNOW THE ANSWER--PEOPLE WANT TO KNOW HOW JIM'S S DOING. WELL THERE'S ANOTHER SIDE--JIM IS DOING VERY WELL. AS FATHER ANDREW WOULD SAY ANY DAY ABOVE GROUND IS A GOOD DAY!
FIRST LET ME SAY THAT I AM GETTING BETTER EVERY DAY. THE TREATMENT IS WORKING VERY WELL AND THE CANCER IS IN A STATE OF CONTINUOUS DIMINUTION. I HAVE NEVER IN MY WILDEST DREAMS IMAGINED MEDICAL CARE COULD BE AS THOROUGH AND COMPASSIONATE AS IT IS AT NIH. WHILE HAVING A FEVER OF UNKNOWN ORIGIN AND THE SHAKES I HAD TEAMS OF 3 INFECTIOUS DISEASE DOCTORS, 3 CARDIOLOGISTS, 3 ICU DOCTORS, THE RESIDENT ON CALL, AND A DENTIST (DON'T ASK) IN AND OUT OF MY ROOM WITHIN THE SAME 4-HOUR PERIOD. BUT AS WE ALL KNOW, THE NURSES BRING ALL THE CARE TOGETHER AND THEY ARE MAGNIFICENT--EFFICIENT AND KNOWLEDGEABLE, GRADUATE SCHOOL CERTIFIED, AND ANNUALLY UPDATED. THEY COVER YOU WITH WARM BLANKETS AND STRIP THEM OFF AS THE FEVERS WAX AND WAN, BUT THEY ALSO HOLD YOUR HAND AND SHARE MEMORIES ABOUT GROWING UP IN FOREIGN LANDS--THEIR LOVE ALWAYS COMES THROUGH. THIS LOVE IS CONSTANTLY BEING SHOWERED ON ME. FRIENDS, FAMILY, ACQUAINTANCES, PEOPLE I HAVEN'T HEARD FROM IN 50 YEARS HAVE WRITTEN TO SAY THEY CARE. AND FAMILY WITH "ESP", KNOWING WHEN AND WHO NEEDS RELIEF AND EXACTLY WHAT THE BEST TYPE SHOULD BE.
SO DON'T FEEL SORRY FOR KATHLEEN AND JOE'S LITTLE FRECKLE FACED JIMMY--HE IS DOING GREAT!
EACH TREATMENT IS SOMEWHAT EASIER AND THE BOTTLE IS MORE THAN HALF OVER AND WE ARE KICKING ASS. BARBARA AND I ARE MORE APPRECIATIVE OF EACH OTHER AND THE INTENSITY OF OUR LOVE THAN EVER. BUT IT IS VERY DIFFICULT FOR THE PERSON WITH THE CANCER TO APPRECIATE THAT HIS PARTNER HAS AN EVEN HARDER TIME--THANK YOU BARBARA FOR PUTTING UP WITH MY WHINING AND SELF PITY. YOU ARE THE REAL HERO OF THIS BATTLE AND I WILL ALWAYS LOVE YOU. JIM

2 Units of Blood

Went to the hospital today since Jim's blood pressure was so low and he was very weak and tired. They gave him a liter of IV fluids, then 2 pints of blood since his hemoglobin was 8.4. We got home at 7:00 pm so it was a long day and he went to bed early. He was able to eat lunch and dinner and keep it down, and his temp is normal. Barbara

Nauseated

Jim felt very well this am after 14 hours of sleep!!!!!! He wanted to visit his first graders at Bailey's Elementary since he's missed them so much. So I drove him over and since they were having a field day the kids were outside. Jim sat on a park bench and the teachers brought the kids to see him. It was unbelievable. When the kids saw him they all ran to him and enveloped him with hugs--it was a sight to see --about 20 kids at once hugging him (could only see his head) and shouting, "MR. JIM, MR. JIM"!
We left after a very short time as Jim was very tired, stopped at Kath and Dan's to drop off Willie's favorite blanket (Jim stayed in the car), then headed home. On the way home had to stop the car as he vomited, and then he felt very weak and tired. So I called Dan to meet us at the house to help me to get him up the front steps and inside. So glad Dan was home.
The rest of the day, he was very nauseated and had trouble drinking fluids and couldn't eat. I gave him medication for the nausea, but not much relief. I spoke with the nurses at NIH and they advised keep up the fluids and the medication and if no better bring him in in the am for Iv fluids. Good news--temp is holding at 99.3. Barbara

A Long Day at NIH

Jim had a bad night last night with nausea and abdominal pain so they wanted to see him at NIH. Fortunately, Mike Fay spent the night with us and accompanied us to NIH. Jim received a couple of drugs intravenously to help him feel better with only minimal improvement. The good news is that his temp remains normal, hemoglobin 9.3, platelets normal, neutrophils at 32,ooo (this is the "bump-up" before the decline), and he was not dehydrated. They administered IV fluids anyway prophylactically. We're hoping that the giving of extra IV fluids with his chemo and the cutting back on Prednisone will give him an uneventful 2 week rest before cycle 5. Got home at 6:00 pm after fighting traffic on the beltway. Hope he is able to sleep tonight. Barbara

Day 5 and Last of Chemo for Cycle 4

We spent most of the day at NIH for Jim's Cytoxin with IV fluids before and after. It was restful for Jim since they gave him a bed instead of a reclining chair. He did some walking outside this afternoon and then enjoyed a lovely dinner from our friend, Carol Beck. It's almost nine pm and he's ready for bed. Let's hope the next two weeks will be uneventful. He'll have a bone marrow biopsy on June 22 and CT Scans of chest, abdomen and pelvis on June 25 to determine how successful thus far the chemotherapy has been. Keep those prayers coming! Barbara

A Busy Night and Day

After a busy day Jim took his sleeping medication at 11 pm and 5 minutes later the infusion pump starts beeping. Well these are very clever little pumps because they give you a read-out of what's wrong. "Battery low" it says. OK we can handle that--put in 2 new batteries, then we get to restart the thing--uh-oh--I'm not my brother, okay????? So it says "1 RESUME PROGRAM" and 3 other numbered options which were Greek to me so I hit the number one--now I ask you, wouldn't you do the same? Nothing happens. So I start hitting other things: "START", "STOP", "START" again------nothing. There were several other buttons which meant nothing to me so I press them (the whole time, mind you, the damn thing is beeping like crazy). So I'm a fairly intelligent woman and think I'll reread the instructions (plenty on how to change a battery, duh, but not a word in 4 pages about reprograming). So I call the night nurse at NIH and she walks me thru the process and everything is fine and the chemo is being infused into Jim's central vein as planned. Best of all the beeping has stopped!!! Now here's the good part--Andy you're gonna love it--after I hit "1" to resume program I forgot to hit "ENTER". OK stop laughing.
So Jim says, "Barb, why don't you write everything down that you did so if it happens again we'll know what to do". Good idea. So I go downstairs to find the instruction sheet and no sooner sit down to write when I hear shouting from upstairs, "BARRRRBARRR--A" (haven't heard a shout like that since the last hip dislocation!) Ran like crazy upstairs to find hips intact, but the PICC line is not. Jim's holding up the catheter and says, "What's this???" (Mind you, in his defence, he is very groggy from the double dose of sleeping medication). So I pinch it off immediately, wrap a pressure dressing around his arm to stop bleeding, and tell him "you pinch this tube tight and don't let go while I run downstairs and get the clamp and the spill kit". I remember all the instuctions about this knowing that these meds are EXTREMELY TOXIC and use clamp, gown, and gloves (I confess I did not put the goggles on) and get all this stuff into the HAZ MAT bag after cleaning Jim's arm. Then I call the night nurse back and say, "Mary, remember me--the one who forgot to hit ENTER, well we have a new problem! " So she instructs us, after deliberating with the doc on call, to come tomorrow morning at 7 am to have a new PICC line inserted. We were both so relieved that we didn't have to go in at 12:30 am that we both slept well for 5 hours.
It took 3 hours for the nurse specialist to insert the PICC line--it seems that these veins wear out after a while. Then on to the Day Hospital for the chemo to be added and a new infusion pump. But wait Jim needs IV fluids first because he's dehydrated. "How much did you have to drink, Mr. Fay?" "Well only the glass of water that the PICC line insertionist gave me because the night nurse said NO BREAKFAST, Mr. Fay, you are having a procedure tomorrow morning." So we left there at about one ish and got home at 1:30 pm. Jim has a much needed nap and Barb visits with Susan and John who brought their grandson, Robbie, down from NJ for the Mets/Nationals game. (Poor Robie--the Mets lost). Jim wakes up soon after Susan and John leave and we're off to Alexandria Hospital to visit Kath, Dan and Charlotte and both of us finally got to hold her in our arms. She really is a darling. Our friend, Maureen, brought over dinner, Mike Monette mowed the lawn, and granddaughter, Callan, (12 yrs. old) did some cleaning and straightening in the house. Bless you all and thank you. Barbara

Charlotte Matthews Henry Arrives

We are so very happy to announce the birth of our newest granddaughter! Kathleen and Dan are doing well and Willie loved visiting his new little sister.
Re Jim's progress: He had only 1 hour of sleep last night even with the order of a new sleeping medication, so the decision was made by his doctors to cut the dose of Prednisone in half. Starting today he will only take 120 mg. Maybe this will allow him to sleep better and be less wired. Carol Beck took Jim to NIH today and it was longer than usual because they had to give him IV fluids again before adding the new bag of Chemo. He continues to be tired and weak, but is very hopeful that this new regime will be less taxing. I took him over to the hospital when he got home and he was so happy to see that Kath was doing well and he thinks Charlotte is beautiful--which she is. Love to all and thanks to you Carol. Barbara

Start of Cycle 4

We've had a pretty uneventful week--the usual fatigue, but on a good note Jim's appetite is back! When we went in to NIH today for cycle #4, they found that Jim was dehydrated (3 drenching night sweats last night) and had to give him a liter of IV fluids before the Rituxan. While there we had a lovely visit from Ethan Kohn (Jim's cousin, Val's son who works at NIH) and also our son, Mike. Then we returned home with Jim's infusion pump going. So far so good. We're trying out a new sleeping medication for Jim tonight since he is on Prednisone again and typically can't sleep while on it. Wish us luck. Barbara
Erin surprised us tonight--she must have ESP because Barb came home sick with a GI bug! Erin took over, thankfully while Barb slept. Feeling much better 6 hours later--hope I'm well enough to visit our new grandbaby tomorrow. Our prayers are with you, Kath and Dan. B.

Holding His Own

A nice weekend. Andy and Jeanie came down from NJ for a few hours and we all enjoyed the visit. Also saw YJ, Sarah, Ellen and Andrew yesterday. Thanks to Mike Monette for installing the handicap bar in the bathroom and to Joe for all the odd jobs. Jim not sleeping as well as he would like, but taking naps to make up. Went to NIH today just for blood work and everything looks good--a "go" for the next cycle starting this Friday, June 5. He will miss going to his 50th reunion at St. Peter's College this coming Saturday, but Andy will keep us informed of all the activities and people attending. Jim trying to exercise a little each day and his appetite is better! Barbara