End of Round 2

Spent almost all day at NIH--11 am til 4:45 pm. Apparently you have to be really hydrated for the Cytoxin--so a bag of IV fluids first, then the Cytoxin, then another bag of IV, then the PICC line was removed and we're home. Maureen brought over dinner (yum, thanks, Maureen) and sat with us as we watched President Obama's press conference on his first 100 days. Except for spending a lot of time in and out of the john getting rid of those fluids (and hopefully cancer cells as well), Jim had a very good day. Thanks to Young Jim (AKA YJ) for bringing over those two darling children last evening! Nan (AKA Barbara)

Cycle 2, Day 3 and Day 4

The past two days have been pretty uneventful--just going in to NIH to have a new IV bag hung. They each run for 24 hours by an infusion pump that Jim wears as a fanny pack. Tomorrow, the fifth and last day of Cycle #2, we go in early because he'll need IV fluids before the final infusion of Cytoxin--that's the one which irritates the bladder so his instructions are to "drink and pee, drink and pee". After that infusion the PICC line will be removed and then home. Thanks for all the cards and prayers--they really help. Barbara and Jim

Happy Sunday

Forgot to post anything yesterday. Sunday started out great with a visit from Father Jack O'Hara (the Young Seminarian, as Jim calls him). Jack administered the Sacrament of the Sick to Jim and gave us Holy Communion during a brief prayer service. (Does this count one may ask????) Most assuredly is our answer.
Then Fred Beck came over to take Jim to NIH to have the next IV bag hung. Thanks, Fred. Then in the afternoon Erin, Mike and girls came over for a lovely visit--Jim had been missing seeing the grandkids since they had to stay away while he was neutropenic (his present neutrophil count is over 3000--normal). We know his Neutophils will go down after this second round of Chemo so we seized the moment! Then, in the evening, Joe came over and while he was here rewired our TVs with the new converter boxes so we won't be cut off from our "viewing pleasure".
We are so, so blessed with wonderful family and friends. Thank you God. Barbara

First Day, Second Cycle

"I had a lovely visit with Kathleen," says Jim when he returns from NIH for the start of his second cycle of chemotherapy. After a big bowl of ice cream and a piece of homemade chocolate cake (shades of the Old Jim!) he is now fast asleep for his power nap. Barb got some planting and pruning done, a little shopping, and visits with Willie in the morning and Ellen and Andrew at noontime. All in all a good day. Love, Barbara

Two Units of Blood

Jim received 2 units of blood today with no reactions so that's good--it should boost him up before the chemo knocks it down again. It was a long day--left home at 9:00 am and returned at 5:00 pm. We kind of feel like NIH is our second home! Tomorrow Kathleen will drive her Dad and visit with him while the Rituxan drips in (should take about 3 1/2 hrs). I'm going to do some gardening as the weather is supposed to be nice. Thanks again for all the support. Carol your dinner was delicious! Thanks and love to all, Barbara

Clinic Appt. Today

Hi all, looks like it's still a go for Saturday to start cycle #2. Everyone was very pleased with the decrease in the size of Jim's lymph node, saying that he has gotten a very good response to the chemo so far. However, they want him to come in for a blood transfusion tomorrow since his hemoglobin was 9.3. I know that number isn't terrible, but the thinking goes that the next round will knock it down some more so they want him to start a little higher. Plus he does have this profound fatigue. The PICC line was put in today also so he's ready to go. Tuesday's ANC (absolute neutrophil count) was 1700 plus, but we don't have today's value yet (that part of the CBC, the differential, takes about 4 hours so we didn't wait around for it), but the nurse is positive it will come up since I give him the Neupogen shot every night. Let's all hope this cycle will be easier on him. Love, Barbara

A Good Day

Yes, a good day, but Jim is soooooooo tired. We enjoyed visits from Sarah and 6 month old Andrew, Kathleen, and Phil. Tomorrow the clinic appt. when Jim sees the whole team. Barb

Planning for Next Cycle

Jim still feeling better, albeit very tired. We went to NIH today for blood draw since his hemoglobin was so low on Sunday (8.8) and they wanted to see if he needed a blood transfusion. Today it was up to 9.5 so they did not give him blood and will reevaluate that on Thursday when he has a clinic appt. He will also have a PICC line inserted that day.
The new plan is to start the second cycle of chemo on Saturday, April 25th. So he will have a few days of R&R before starting again. Barbara

Home, addendum

No fever for 48 hours, ANC is 590, hemoglobin a bit low at 8.8, but they think that will come up. He's very tired and I tucked him in at 9:00 pm and think he'll sleep just from the joy of being in his own bed! We figured out on the way home tonight that he has spent 20 out of the past 31 days in the hospital and that's not counting his 5 days of daily trips to NIH for the chemo! Thanks to Ann, Joe, Dan, Erin, and Mike for your loving care in the hospital and to Andrew for cutting the lawn--what a nice surprise. Love to all, Barbara

home

free at last, free at last---thank god almighty[ and the skills,compassion and prayers of hundreds] i am free and home--thank god for BARBARA[

Lucky 13th Day Post-Chemo

Happy to report that Jim had a very good day today. NO FEVER AT ALL TODAY! He also got permission to go outside and Dan Henry and I wheeled him out to the courtyard and he loved feeling the sun beating down on him. But you all would have laughed at his getup: pajama bottoms, sweat shirt with yellow gown covering to keep out germs, blue latex gloves, a pink mask, and a large white towel draped over his head. I took a picture with our cell phone, but don't know how to post it--I need a kid to do it! He took a 3 hour nap and woke up a new man! His ANC (neutrophil count is 100--still going up). Praise God! Dare we hope that he will be coming home soon? Barbara

Day 12, post chemo

Today Jim's temp never went above 101.5, however Infectious Disease docs ordered a CT scan just in case they were missing something. We got the report tonight and his lungs look good. Also they said the lymph nodes in his chest got smaller--great news--chemo is working! His ANC (absolute neutrophil count is 60 today). He's very, very tired, but actually asked for and ate a PB&J sandwich! Joe and Ann are with him now so I left about 7:00 pm. I imagine he'll sleep after a very tiring day. Love, Barbara

See-Saw

Okay, didn't get home til 11:00 pm last night so I went right to bed. Yesterday, Jim had a fairly good day with fever in am controlled with Tylenol, had a nice visit with Pat and Rick from 2--5:30 pm while I went to view Kathleen and Dan's baby's sonogram in the afternoon. At 6:00 pm his temp shot way up again and he called me to tell me he was "freezing" and couldn't get warm. He gets a little confused when he has fever so I went back to NIH in the evening till about 10:30 pm. This morning he sounds better, says he thinks he slept, but the nurses say he was restless all night. Today the Infectious Disease doctor ordered a CT scan and he'll probably have it around 11:15 (drank the contrast at 10:10), so I have a little time before I go over there.

Not sure why the CT scan until I speak with the doctor, but I suspect they want to make sure they're not missing anything else. Forgot to mention that on Wednesday his stool specimen showed positive for C. Difficile which is a nasty little germ which throws out toxins and causes colitis (thus the diarrhea). They've been treating it with Flagyl since Tuesday when it was suspected. Also yesterday his neutrophils hit 30 (normal is 1,780--5,380) so he is still nadiring (is that a word???) but as we've been told that is what is expected from the chemo. But it also means he is soooooooooooo vulnerable to infection, thus the isolation.

Thanks again for the support, love and prayers. Special thanks to Pat and Rick for yesterday and in advance to Joe and Ann who will be going out there this pm. Love, Barbara

Oh I almost forgot, "New Kid Henry" at 32 weeks gestaion is about 5 lbs., with normal (for a Fay) head size and abdomen same size as head, which I understand is what it should be. #12 should arrive the first week in June and we all eagerly await her/his arrival! Go Kath!

Looking forward again

Well today was MUCH better than yesterday. Yesterday I couldn't even post a message on this blog for fear of being too negative! Yesterday (Tuesday) Jim ran a very high fever (103--104) the whole day, had diarrhea big time, was dehydrated, and could not eat or drink a thing due to the terrible sores in his mouth from the chemo. Also his IV infiltrated and his right arm blew up like a balloon. After several attempts they finally got an IV started to get his electrolytes under control. I came home depressed and wondering if it was all worth it.

But today he was so much better, both in body and spirit. His temp never went over 101.5, he was able to nap, and best of all he is able to eat and drink again, although he has no appetite. He did say that Shirley Marvin's chicken soup tasted so good to him! Thanks, Shirley. He is on just about every kind of antibiotic, antiviral and anti fungal drug and his neutrophils are at 50 (I guess this is the nadir all the nurses and doctors have been predicting!). Since he is neutopenic everyone who goes in the room must wear gown and gloves. His spirits are amazingly good, considering.

I want to thank Carol and Erin for saving my sanity last night, giving me a shoulder to cry on, and share that much needed bourbon with me (although Erin only had hot chocalate!) You have no idea how that support has lifted me up. Also want to thank Joachim for writing all the way from India and also for the prayers. And Val, we would just love it if you and Ethan would visit us when you're down here this weekend as long as you don't mind donning gowns and gloves.

Again, thank you all for your love, prayers, comments (we love reading them), concerns, etc. How very blessed we are to have so many wonderful friends and family. Love, Barbara

Out of ICU/Into Telemetry

Jim's much better today, although still spiking fevers. An echo-cardiogram showed his heart is normal so they moved him out of the ICU and onto a telemetry unit so that they can monitor his heart rate. They want to keep an eye on him just in case he has another syncope episode (make sure it's not being caused by a heart arrhythmia). They're also being very cautious that the fevers are not caused by infection as his immune system is very compromised. That's OK--we like caution. He really wants to come home ("these hospital beds are too damn small!") but we both know that he's better off being watched carefully. I have passed on to him all your good wishes. Love to all, Barbara

Easter Sunday and Colleen's 15th Birthday

Well today was certainly eventful. Jim woke up this morning with a temp. of 101.8 so I called NIH and they said to bring him in for blood tests. So I called Erin to tell her we wouldn't be going to church with her and family and she said, "Wait for me I'll be right over." So the three of us went off to NIH. They drew blood cultures, urine cultures, EKG and decided to keep him overnight for observation. While they were looking for a bed to admit him to, I stepped out to the rest room and Erin stayed with him. I returned to find a room full of nurses and doctors. Jim told Erin he felt nauseous, then started sweating profusely, turned pale and passed out. The nurse called a code on him, but he came to within seconds. They first thought he had had a seizure, but later, after admitting him to ICU and having a cardiologist examine him, they decided that he had had a vasovagal episode which caused the fainting. They are keeping him overnight in the ICU to watch him. Turns out his electrolytes were out of wack and he needs IV fluids and replacement of magnesium, potassium and phosphates. He's exhausted--I sure hope he can sleep tonight. Come to think of it I am too. Good night. Barbara

BODILY FUNCTIONS

I SEEM TO HAVE COME FULL CYCLE. NIH DIETIANS,RNS,NPS, DOCS, RESEARCH CHIEFS,FELLOWS ,OTHER PATIENTS -ALL EMPHASIZE THE IMPORTANCE OF FLUSHING THE DYING/DEAD CANCER CELLS THAT THE CHEMO AND VARIOUS MEDS HAVE KNOCKED DOWN -OUT OF THE BLADDER ASAP.DITTO FOR THE BOWELS----BACK TO TOILET TRAINING.I FIND RELIEF AND PRIDE IN MY "ACCOMPLISHMENTS ".FINALLY OFF THE PREDNISONE .SHOULD CRASH TOMORROW --HAVE BEEN ON 240 MG/DAY FOR 5 DAYS.REREADING THIS MESSAGE I AM PROBABLY STILL WIRED-----------------------------LOVE--JIM.

Day 5 of Chemo

FINISHED FIRST ROUND OF CHEMO TODAY--EVERYONE AT NIH SAYS I AM DOING VERY WELL. MY BELIEF IN A GOD WHO WORKS THROUGH HIS PEOPLE HAS BEEN CONFIRMED AGAIN AND AGAIN. THANK YOU FOR YOUR THOUGHTS , PRAYERS AND LOVE. YOU HAVE NO IDEA HOW LOVED I FEEL. FAMILY, FRIENDS, NEIGHBORS AND MOST OF ALL OUR BELOVED BARBARA. DEO GRATIAS. JIM

Day 4 of Chemo

Jim continues to tolerate the chemotherapy, but the high doses of Prednisone (240 mg./day) make him nervous and interfere with his sleep. He's not quite bouncing off the walls yet but I did have to stop him from re-doing the taxes and from cutting down branches from the evergreen tree! Thanks for all the prayers, cards, meals and caring. Barbara

First day of Chemo Monday

Jim slept through while receiving treatment. Tolerated it well. By Monday night, tumor already shrinking. Goes in each day at 2 p.m. to receive a new bag--run by an infusion pump--wears in fanny pack. --Barb.

So far the hardest thing to do is to drink water "hydrate" continuously to flush out the destroyed cancer cells. This entails pissing every two hours. Sympathies are not forthcoming from mothers who retort: try carrying a baby for nine months. Alls well. Barbara is a saint. It is an impossible task to understand. Even more impossible to comply accurately with all the medications and dietary commands. JIM (typed by administrative assistant since I peaked at 10 WPM with 5 errors in all caps, no punctuation.)

Jim's chemo has been delayed to 12 noon as they want to get him more hydrated before they start

My brother Andy thought this would be a good way to keep everyone informed on Jim's condition.