Unforgetable

Jim had a wonderful visit with Scotty and Judy Watt from Gettysburg yesterday. He really perked up for a while. He was also able to get out of bed and into a wheelchair for a short while( first time since Christmas day) with the help of Scotty, Judy, the aide, and myself. Unfortunately, last night he had a bad night with renewed agitation (BIG TIME) and the aides quit on me (although they finished their shifts, they let me know they would not be back). The agency would have gotten new aides, but Hospice thought he would be better off in the In-patient Unit again til they get his meds straightened out again. So an ambulance transported him and he is settled in his old room again. All the nurses and doctors and volunteers remembered him well (we all know he is UNFORGETABLE) and welcomed him back with loving arms. I swear anybody who works for a hospice has to be a saint--what beautiful people they are. So we feel safe and well-cared for again. The address at Capital Hospice is:
4715 North 15th Street
Arlington, VA 22205
703-525-7070
But please call first if anyone plans to visit. Happy New Year from Barbara and unforgetable Jim

Home Again

Jim came home yesterday from the hospital into Hospice care again. I have hired 24 hr. nurses' aides to help me care for him. Yesterday was a bit chaotic with the transition and having to meet with so many people (discharge planners of hospital, discharge planners of hospice, agency nurse who will supply aides, and finally the hospice nurse to readmit him). After many hours of figuring meds and doses, we settled into a routine. He was quite agitated during the night and parts of the day, but is sleeping soundly now. We had a wonderful surprise of Kevin Burke from Boston area pulling into our driveway at 8:00 am to visit with Jim and I. His brother, Walter, drove down with him. They only stayed with us a few hours and took off for home at 11:30 am. Kevin had to get home to Linda who has been ill and it is also their 42nd Anniversary tomorrow. It meant so much to have him here. We will be visited by Scotty and Judy Watt tomorrow from Gettysburg--old friends whom we haven't seen for about 2 years. LOVE AND HAPPY NEW YEAR TO ALL. Barbara and Jim

Christmas, 2009

Most of Christmas was lovely. All kids and grandkids and Pat and Rick came to the Hospice In-Patient Unit to visit us. Since they have a very homey family room with Christmas tree, a piano, and a toy box full of toys it was a nice atmosphere for everyone. Toddler and babies came by in am with parents--unfortunately Jim slept thru their visit, but Barb enjoyed it immensely. It was great to have 3 year old Willie come up to me and whisper, "Nan, can I go in and kiss Pop?" So he and I went in to check on Jim and he was still sleeping peacefully in his room, but I was able to get a couple of pictures of Willie kissing Jim--first on his leg and then venturing up to kiss his arm and Pop just slept thru it all. But when I showed Jim the pictures later in the day, he was so pleased. The afternoon brought the older kids and my sister, Pat, and husband, Rick and Jim was awake (and himself) to enjoy them. He was his old teasing self when 14 year old Jimmy (who has never liked being kissed) bent down to give Pop a hug, Jim grabbed hold of his sweat shirt and wouldn't let go until everyone in the room gave Jimmy a kiss! And then he still wouldn't let go until Jimmy gave him a kiss.
Then in the evening Jim ran a fever and was taken to Arlington Hospital, diagnosed with a right lower lobe pneumonia, and admitted and treated with IV antibiotics. I spent the night with him again and he did not sleep a wink! He was extremely agitated and confused trying to pull out all his tubes (Oxygen, urinary catheter, and IV's). Nothing they gave him calmed him down. His temperature is better today, but he remained agitated and confused. A new medication was added and did give him 2 hours of calmness and lucidity, but still no sleep! Our adult children were all there with him today and are spelling each other throughout the night as they are insisting I come home to sleep tonight since I literally was awake all night with him. He will probably remain in the hospital til Monday at which time he will be discharged into Hospice care again, but this time maybe to home. We will meet with the Hospice liason person tomorrow morning for the discharge plan. We think we will need 24 hr. care by nurses' aides if he does come home as he is now too weak to even stand with help. My poor, poor Jim. Love, Barbara

Christmas Eve

After many days of heavy sedation, Jim woke up yesterday morning feeling pretty good, although weak. He talked about wanting to be able to think more clearly and not be bothered by hallucinations. It has been a blancing act on the part of the doctors to relax him, but not so much that he sleeps all the time. Just when we thought it was going in the right direction yesterday his right hip dislocated again and we spent the night in the ER of the local hospital while they knocked him out and manipulated it back into place. He returned to Hospice at about 2:30 am (Joe was with him--he relieved me at 11:00 pm). And it seems like today he is back where we started--very, very, very agitated. Several family members took turns sitting with him and he was visited by friends, but for the most part he was nervous and agitated. The nurses and aides have just gotten him ready for bed and gave him a shot of Nembutal, so he is now asleep and I'm hoping he will sleep thru the night. I will stay with him on a cot next to his bed so I'll be there when he awakens on Christmas morning. May the Christ child be in your hearts this holy night and may it be a "Silent Night". God bless you all. Love, Barbara (and Jim)

"La-la" Land versus Bouncing Off the Wall????

Hi all--posting this from the Hospice IN-Patient facility in Arlington. Jim came here Wednesday night so that the Hospice team could tailor his meds to prevent anxiety while still giving him a good night's sleep. It turns out to be more difficult than anticipated as he is either "zonked" or anxious and restless. But they're working on it. He was extremely restless last night until 4 am when they gave him a Nembutal and then he slept til noon, woke up ravenous, ate a huge lunch and after a bath and massage he's snoring away again. It's 3:40 pm now and he's been napping since 1:30 pm. Seems to be a feast or famine situation!
Our kids and grandkids and Pat, Rick, Susan and John were all here Friday night to sing happy bithday and have cake and ice cream in the Hospice Family room. Jim just loved it, but tired after about 45 minutes. Results of his spinal tap at NIH showed no lymphoma cells in the spinal fluid so the treatment they had recommended wouldn't work for his anxiety. They'll have to control it with drugs. Most doctors agree that the anxiety, restlessness, and insomnia were caused by the toxic effects of the Chemo. Keep praying for his peace of mind. Thanks. Barbara

Birthday in Hospice

Jim was admitted to the in-patient unit of Hospice yesterday. They want to look at all the drugs he's on and hope to tailor them to control his anxiety, restlessness, and intermittent confusion. Also to allow him to sleep. He seems slightly improved today and may come home tomorrow. Many visitors to wish him a Happy Birthday--73 today! Erin came with Finlay and Maeve and Pop invited the girls into bed with him for a birthday hug. Pat and Rick, Carol and Fred, Phil Rodilosso, and Jack O'Hara also came for a visit. And many, many phone calls with good wishes. How blessed we are with family and friends! Barbara

Spinal Tap

Had a spinal tap today to see if any lymphoma cells in spinal fluid--won't have results til early next week. Linda McCullagh, a cousin of ours and an NIH oncology research nurse, was there and sat with Jim and I as he had to lie flat for an hour. She's wonderful and had a lot of good hints for handling symptoms. Jim did well with it and did not develop the headache that sometimes follows a lumbar puncture. But he is pretty exhausted and has napped a lot since we got home. I still can't understand why NIH continues to take care of him, but I don't ask since it's the best care in the world. Nervousness, restlessness, agitation, insomnia still a problem. Hoping for a solution soon. Barbara

Our Hearts are Heavy

We are so sorry to let you know that Jim's lymphoma has become very aggressive again--it's even in his lung--and they (NIH team) don't recommend any more treatment. We have contacted Hospice today and the nurse will come Monday morning to start the admission process. In case anyone calls us, we are going to the Retreat for Seriously Ill tomorrow through Sunday--this time as retreatants and not as nurse and helper. Perhaps it is good timing and will help us through this very hard time. Jim did press the doctor to know how much time he had left and although the doctor was reluctant to say, it looks like anywhere from one to six months. This news was not totally unexpected since we have watched the lymph node in his groin grow larger these past few weeks. Jim seems to be more worried about me and how the children are taking it--he is very brave. Next week he will have a spinal tap to see if there are any lymphoma cells in his spinal fluid. If there are, they will recommend an infusion into the spinal canal to relieve the symptoms of nervousness, anxiety and sleeplessness. At this point we are praying for some peace of mind. Thank you all for your love, concern, and prayers--we are so grateful. Love, Barbara and Jim

Update

PET scan was done on Nov. 27 and needle biopsy on Dec. 2. We won't get results til next Thursday (Dec. 10) when we have a clinic appt. at NIH. But a blood test has shown that Jim is no longer neutropenic--first time in several weeks. Our Thanksgiving was so nice at Kathleen and Dan's--a small group of 18. Jim was able to sleep between dinner courses and he was very comfortable. He's been having a hard time with nervousness and anxiety lately, but had a very good day on Tuesday when we went to the National Art Gallery. They have wheelchairs and I was able to wheel him around to various exhibits, do a little Christmas shopping in the shop, and have lunch there in the cafe--all in all, a lovely day. Looking for more of those. Barbara

Thanksgiving Eve

Jim's home now. PET Scan scheduled this Friday am and needle biopsy of lymph node scheduled next Wed., Dec. 2 in am. Young Jim spent the night with him last night and tonight, Carlos, the aide we hired will come from 11:00 pm til 7:00 am which will assure me of another full night's sleep. We're going to Ellen's pre-school Thanksgiving program this afternoon and to Kathleen and Dan's tomorrow for Thanksgiving. May you all have safe travel this weekend and enjoy your various family gatherings. Love, Barbara and Jim

Diagnosis: TIA

After MRI, Ultra-sound, and Echocardiogram, the conclusion by the doctors is that Jim had a TIA (transient ischemic attack, commonly known as a "mini-stroke"). He is perfectly fine and the doctor ordered an Aspirin a day as a preventative. Happy Thanksgiving to all. Barbara

A Scare

Jim was admitted to Arlington Hospital last night for observation. Yesterday, about 3 pm he started talking and all that came out was this garbled language--nonsense words. I called the ambulance right away thinking he was having a stroke. The symptom lasted about 10-15 minutes and he seemed all right afterwards, the CT scan was clear--no bleeding in the brain. Joe was with us all the time in the ER. Jim has had an MRI this morning, and is waiting to have an ultra sound of his carotid arteries. A neurologist was called in last night and she will meet with us this pm to discuss all results. What next, Lord????? Barbara

Bad News

We went to NIH yesterday and Jim has a lymph node that is enlarged in his left groin. Doctors feel it is most likely a return of his cancer. They will schedule a needle biopsy of the node and a PET scan to see if there are any internal nodes that are enlarged. Needless to say it was very disheartening news and we are still trying to process it. Jim sleeps most of the day, is very depressed and discouraged. Can't say I blame him. It has been advised that we postpone the hip surgery that was tentatively scheduled for Dec. 11 and we will go for a meeting at NIH on Dec. 10th. By that time all of the tests should be completed. Don't give up on us with your prayers as we will need all the help we can on this journey. Thanks for your love and support. Barbara

A Boost for Jim's Immune System

Jim had blood drawn Monday and hemoglobin OK, but neutrophils even lower at 195 (normal=1700-5400). Nurse practitioner called from NIH when he got the report and said the doctor wants to start Jim on Neulasta which is a longer lasting Neupogen-type drug which will raise the neutrophils. So tomorrow we will go for his reevaluation at NIH and he'll get the shot then. Barbara

Long Story to Update You All

Sorry I haven't posted anything lately. We were doing fine until 10/14 when Jim's right hip dislocated (it was the left hip twice in July) while we were at our house on LBI. Went to local ER where it was manipulated back into place. Jim was doing fairly well, although still netropenic, when that right hip went out again on 10/24 AND again on 10/25--both times manipulated back into place under general anesthesia in OR in Virginia Hospital Center. But this time Jim continued to have severe pain in hip and two orthopedic opinions recommend revision surgery. Well he's not a good candidate for surgery with no active immune system (risk of infection too high) so the oncologist recommended waiting to see if neutrophils come up and, if not, giving him a shot of Neulasta (a long acting Neupogen-like drug to raise neutrophils). Then last week he was hospitalized at NIH with a rapidly falling hemoglobin (hgb.) (oxygen carrying red blood cells). A CT scan showed a huge hematoma (pooling of blood) in the muscle of his right hip. The docs theorized that the bleeding caused the falling hgb. and the pain--all this from the trauma of 3 dilocations and 3 manipulations. They transfused him with 2 units of blood and monitored hgb. 3x/day until it tapered off. He was discharged on 11/10 and we go twice a week to check CBC (looking at hgb. and neutrophil counts). So we're waiting and being EXTREMELY CAREFUL with his right hip. Next week (11/19) we will have a reevaluation of his CLL and lymphoma at NIH. Barbara,

Good News and Bad

I've been asked by many people why I haven't written on the blog for so long, but Jim has been doing well--sleeping much better than before, walking mostly with a cane, but uses the walker when the distance is too far (this walker has a seat on it which allows him to sit and rest whenever he tires). He still has some insomnia, but not nearly like before. We went to our house on Long Beach Island for six days last week (first time since last November) and I think the ocean air was good for him--he slept well for 6 nights straight! He is neutropenic again--absolute neutrophil count (ANC) below 1000, but trending up. This happened in mid-August as well, but gradually came up. People at NIH say that about 30% of patients treated with Rituxan have a dip in their neutrophil count months after receiving it and of course we all know that if there is a complication or adverse reaction to anything, Jim Fay will get it!!!! While he is neutropenic we have to be extremely careful because his immune system is compromised (constant hand-washing, avoiding crowds, wearing a mask when he goes out, no kissing and hugging, taking temperature every day and if fever, getting to a hospital for immediate treatment with IV antibiotics). We were at NIH today and need to return in 2 weeks for another blood test. So that's it as far as Jim's health is concerned (Oh yes, and I'm getting more sleep!) Barbara
Sadly, we have to report that our daughter-in-law, Sarah's brother Scott (age 33, father of two and husband of Joleen) died today in Seattle after a 3 month battle against Burkitt's Lymphoma. Please keep him and all the family in your prayers.

Jim celebrates being home

I'm sure many of you are all anxious to learn how Jim is doing . I think this picture is worth a thousand words .



Your blogmaster Andy

A Normal Life

Life seems to be getting back to normal. Jim had a good night's sleep last night (sans sleeping pill!) Today we went to the gym and he is walking with a walker a little further every day and faithfully doing the exercises that daughter-in-law, Ann, the physical therapist extrordinaire, instructed him to do. Each day he is stronger and his appetite is great! Tomorrow night he will join the ROMEO's at their favorite restaurant. Thanks to all our supporters! Barbara

DEO GRATIAS

MY DEAR FRIENDS, AND I WILL NOT ENUMERATE ALL OF YOU BECAUSE I ONLY HAVE 3 INK CARTRIDGES LEFT. THIS REMISSION WAS CAUSED PRINCIPALLY BECAUSE OF THE PRAYERS, HOPES, AND INTERCESSIONS OF ALL OF YOU. I CANNOT ADEQUATELY EXPRESS HOW GRATEFUL I AM FOR YOUR CARING. YOU HAVE SAVED MY LIFE AND DARE I SAY THE LIVES OF ALL MY FRIENDS, RELATIVES AND ALL THOSE I HAVE COME TO KNOW, LOVE, AND RESPECT OVER MY 70 ODD YEARS. YOU ALL WILL REMAIN FOREVER IN MY HEART. LOVE, JIM

CELEBRATE WITH US!!!!!!

Yesterday at NIH we found out that Jim's CT scans showed that all of his lymph nodes have gotten even smaller than the CT scans in June! The bone marrow biopsy showed that the marrow was clear except for 5%. That 5% consists of CLL cells which is so minimal that the doctors are not concerned. Doctors are very pleased and don't need to see him for 3 months! So we are greatly relieved and thank God for this blessing and thank all of you for all the prayers and loving concern. Another bonus--Jim slept for 10 hours last night! Love to all, Barbara

More Normal

Still having ups and downs with the sleeping (last night a good night/Friday night a disaster). PT is down to twice a week for 2 more weeks and that has really made Jim stronger. His appetite is back to normal also (a side effect of one of his drugs is "overeating") so I think we'll be seeing a weight gain soon. He entered a weight bet with Frank Birkenseher --Frank has to lose and Jim has to gain! Poor Frank--didn't know about the side effect of the drug--maybe you should cry foul! Anyway, things are looking more normal. Jim wanted to go to church today, so we did. We went to Queen of Peace and saw Mike Hanna (a long-time high school friend of Mike's) directing the choir. It was a wonderful liturgy--so we may have discovered a new church to go to! Barbara

Back to NIH Tomorrow

A little change in plans. The bone marrow biopsy was moved up to tomorrow (Wed. 8/12) and because we decided not to go away with our kids to LBI next week (Jim is afraid to go so far away from his doctors), the new date for CT scans and clinic appointment is going to be Thursday, Aug. 20. We should be getting an update of Jim's progress on that date. Naturally we're hoping that he is in remission, but that mysterious low neutrophil count is nagging away at us. I went to a support group for caregivers of patients with Cancer last night with Erin (her idea) and found it very helpful. I was amazed at how many people are facing the same issues as we are and how hard it is. Jim only had one hour of sleep last night so I've hired Tsega, the Home Health Aide, back for tonight. Also, Dr. Roath, whom we saw today, explained that his body is getting used to the Lunesta that he takes to help him sleep at night. Therefore he has to skip it one night every week to allow it to get a "kick start" again. He will be taking Melatonin tonight--don't know if it will do anything, but worth a try. Happy dreams you all! Barbara

Hanging in There

We had a fairly good week, with Jim's sleeping improved, but interrupted. Has a hard time going back to sleep. We had a great visit from Jeanne and Frank Birkenseher from Thursday til Sunday (Alyssa stayed with Erin and all the girls enjoyed each other). Such good old friends--it was so good of them to come. Jim had some periods of agitation, but they always seem to occur right after awakening--the doctor says that he is "locked into REM sleep" when that happens and we need to wake him up fully by turning on all the lights, the TV, the radio, get him up and dressed. That seems to work to calm his agitation. He still gets PT 3x/week and that definitely is making him stronger. The new worry is that his neutrophils have gone down (300, then 280) and the folks at NIH don't seem to know why. So we are taking neutropenic precautions once again (STRICT hand washing, wearing a mask around others, monitoring temp 4x/day, etc.). This has gotten Jim very anxious again understandably. The next blood test will be this Thursday, Aug. 13. Keep those prayers coming! Barbara

HALLELUIA!!!!!!!!!!!!!!!!!!!!!!!!

Jim slept 10 1/2 hours last night with this new sleeping pill. And today his thinking was much clearer. This was the first full night's sleep he has had in 4 months! He was a little too groggy this a.m.--wanting to go back to bed a lot. So the doctor wants him to try a half of the sleeping pill tonight. We told Tsega, the aide to come back tonight so we can make sure this is not just a fluke. He went to get fitted for his hip brace and although it looks very cumbersome he says it is comfortable. He doesn't have to sleep with it on but says he'd like to try it. It makes him feel secure that his hip will stay in place. I guess any one of us who had his/her hip dislocate 15 times we'd do the same. I know its been one of his big worries. Thank you Jason for giving up most of your day to us yesterday and to all the ROMEO's (Yes, it is "Retired Old Men Eating Out") for bringing the food, beer, soda, but most of all yourselves to Jim at home! Joe, Mike M., Dan, and YJ came as well and I think a good time was had by all. Barbara

Looking Up

Things are looking up. Even though Jim hardly slept at all last night, Tsega, the home health aide was here and was particularly attentive and compassionate with Jim. When she left this morning he said, "You'll come back, won't you?" Today the new psychiatrist ordered a new sleeping pill and explained most of Jim's symptoms--thinks its from the chemo. Hope the new med. works! Had the ROMEOs over tonight for pizza--Jim just loved it. Barbara

About the Same

Everything about the same. Interviewed a Home Health Aid (a nursing student from Ethiopia)yesterday and we both think she'll work out for night care for JIm--liked her a lot. Jim sees neurologist tomorrow and another psychiatrist (one with more experience in geriatrics and medical problems) on Tuesday. Hope for the best. Barbara

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

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

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

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.