Day 49

Almost halfway!! Jeff has had two appointments this week. Tomorrow we see Dr. Matous--Jeff's dr. It will be the first time we have had an appointment with him since seeing him in the hospital. Actually, Monday he stuck his head in the door while we were waiting for the other Dr. and said hi. Not much has changed this week except that Jeff has gone to 30mg of prednisone daily. It has brought his blood sugars down slightly. He is getting used to finger sticks and belly shots, but it still doesn't make him really happy. Food actually now has some taste to it and he is enjoying it. He has gained about 5 pounds back. He is walking betweeen 30 and 40 minutes a day on the flat at the bottom of the road. Whenever the girls are here, they walk with as do the grandkids. They either ride their bikes or go in strollers. He has some "funny" feelings in his feet that he told the dr. about the other day. It is somewhat numb but not tingling. It comes and goes as well. He had the same sensation in the hospital, but thought that it was due to how swollen his feet were with the retention of fluids. The inability to sleep despite a sleep aid is also not being fun for him---but he says that in comparison to the rash and diarrhea, he has nothing to complain about. Good spirits!! We actually went out to eat this week at a place that has the kitchen in view and will cook things exactly as you want them. He, Brooke, Breanna, and I went. Brooke and I ordered while Jeff sat outside and read a book until they brought us our order. He was pretty nervous about it, but all went well. Brooke was here for about 5 days. She took him to the dr. on Monday which gave me a great break. I watched Breanna which was a break for her. She was very helpful the whole time she was here. We also went to sacrament meeting---but sat on the couch to receive the sacrament. He wore his mask and as soon as he had partaken of the water, we got in the car and I took him home. Good times!! There is progress in Snoyland!!!

Day 41

Two appointments this week so far. Only a few changes in medications. Jeff has to continue to prick his finger 4 times a day to know what his blood sugars are. He is taking insulin shots 4 times a day as well. They increased his "sliding scale" of insulin, so he takes greater amounts of insulin each time before he eats. The dietician wants to send him to diabetic counseling and carbohydrate counting which doesn't make him happy at all!!!! He said he will just stop eating if that's what they're going to do. We have mixed messages. Your blood sugars are too high and we're having to give you quite a bit of insulin, and, eat, eat, eat so you don't lose any more weight. They don't jive together at all. Hmmmmmm...IV antibiotics for the blood infection are still being given. The anti-fungal medication that he is taking will not be good enough to cover any fungal infection now that he is on steroids. So, the dr ordered a new antifungal called voriconazole or vfed. It is extremely expensive---$1100 retail for 30 days. So, of course, the insurance company is wigging out and not wanting to have him on it. You would think that when they know he has had a bone marrow transplant and is immunocompromised, they would let him have the medication. So, we have been fighting with the insurance company since Monday. Just found out from our pharmacy that they approved it, but they can't get it in until tomorrow. So, Jeff's first dose will be Friday. If he gets a fungal infection in the next little bit, I will be quite ticked that they wouldn't start it right away. Our friends from the hospital--- they wouldn't let them out until he had the expensive meds in their possession because of the risk the fungal infection is pretty great in this population of patients. Hey, Jeff gained 1 pound in the last two days!! Wahoo!! It is a big deal to not have him losing anymore weight and to actually gain something. Over and out!!

Day 38

These last 7 days have been filled with dr's appointments. Starting last Monday, Jeff had an appointment every work day. Monday Jeff could hardly stand the itching from the rash all over his body. It is called graph vs. host disease. The nurse practitioner came in and asked if we wanted to continue to torture him---she couldn't make the decision to start him on steroids, so a dr. came in, examined him, and made the decision to start on what they termed..low dose prednisone. It is 40mg per day which isn't really that small of a dose in my opinion, but he said that most times they start the patients on 80-100mg daily. Jeff had also been running a temp for days. That morning at the dr. his temp was 100.9 so they drew blood cultures. The steroids started to help him that day. Tuesday started with a call from the dr'.s office that one of the blood cultures had come back positive meaning that he had a blood infection. We had to get into the car and go downtown for him to be dosed with IV antibiotics--vancomycin. It is a big gun. I administer it at my hospital all of the time. Wednesday the nurse practitioner wanted some labs to be done on Thursday which didn't make us too happy. They have to do with his immunosuppressant drug and the antibiotic. No other changes were made on Wednesday. Kind Monica took over care of Jeff Thursday so I could work my one day a month to keep current and employed. He had a PET scan done that day at noon; the purpose of a PET scan is to see how much cancer is in the body. The scan lights up like a Christmas tree wherever there is cancer. Friday was D-day to find out the results of the PET. We had an appointment with a physician that day rather than a nurse practitioner. Prior to his coming in, the dietician came in to talk with us and get us familiar with a one touch glucose scanner. Because Jeff is taking steroids, he has steroid induced diabetes. His pancreas has shut down for the time being until he is finished with the steroids. The dr is planning to keep him on the prednisone for about 8 weeks. So, for the next 8 weeks or so, Jeff gets to take his blood sugars 4 times a day. They get progressively higher as the day goes along, so he needs insulin shots just prior to lunch, dinner, and at bedtime. He isn't thrilled at all about it, but is getting used to it and being a trooper. When Dr. Bearman came in, he told us that the PET scan looked great. He read it to us, reiterated that it was good, and we--especially Jeff, still didn't believe it. I even had to tell him to smile, that this was great news! Right now we are status quo, with his getting iv fluids, iv antibiotics, insulin, and having his wife shove both food and drink at him constantly. Tomorrow is another day and another week. We supposedly only have to go in 3 times this week. Hurray! We are so excited about the results of the PET scan. We are getting into a pretty good routine. Thanks for all your thoughts and prayers. We know they work!!

Day 29

It's Friday and time for a weekly update. I saw a nurse practitioner on Monday and nothing significant happened. She looked at some rashes that I am getting and wanted to watch and wait. I saw her again Wednesday and she did my bone marrow biopsy. They are looking for no disease in the marrow and that my marrow is taking on the characteristics of of the donor. She also decided to do a skin biopsy because of my rashes to see if it is graft versus host disease(GVHD). The procedure went well as they gave me conscious sedation so I didn't feel her digging into my bone marrow. I am just sore for a day or two after the biopsy.

Today we saw Dr Bearman and he had the results of the biopsy's. The bone marrow biopsy showed no evidence of lymphoma in the bone marrow. It also looked like it should concerning the donor marrow engrafting and my marrow taking on the characteristics of the donor. The skin biopsy came back positive that I have a mild touch of GVHD. Nanette and I thought he would treat and try to eliminate the GVHD. He does not want to treat it at this time. The beneficial part of GVHD is called graft versus disease. The donor's bone marrow will also attack any left over lymphoma. He does not want to discourage this from happening. So we walk a fine line watching the rashes and living with them. They do itch so they gave us a prescription for pretty strong ointment to help with my comfort.

Counts are still increasing and looking good. Platelets are 186 with 150-400 the normal range. White blood cells are 5.9 with 3.7-10.0 being the normal range. Absolute neutriphil count ANC is 3.6 with 1.5-7.5 the normal range. Red blood cells are 36.7 with 42-53 the normal range. So everything is in the normal range except for red blood cells.

I am still dealing with my bowel issues. I get diarrhea once a day and can control it with the drugs they have provided. Fatigue is getting slightly better and I am trying to walk 30 minutes each day when weather permits. Now Nanette wants to tell you the real story.

Jeff is still losing weight which we are trying to mitigate with high calories, high protein, and frequent meals. It is because he is trying to heal and also has some GVH, and his skin is his biggest organ. His body is trying to fight alot, so his metabolism is running high. He has no interest in eating, yet he is good at forcing himself to eat and drink. The dietician called today and also suggested using soy milk instead of regular because of Jeff's diarrhea. We are going to be doing more smoothies. He can now have some fruits and vegetables following a great washing effort. We are only introducing one new thing every other day or so to make sure that we can watch and see how his bowels adapt to each new food. I told you, I brought a brand new baby home....All mothers will understand this last part that I wrote.

His spirits are still good. There are periods of frustration but they are pretty infrequent. It has now almost been 2 weeks of cooking 3 meals a day and I haven't died yet and neither has he.

Last but not least, there have only been 3 changes in medications in the last two weeks. His tacrolimus--prograf--immunosuppressant, is 4 pills in the am and 5 pills in the pm. Today he started bactrim which is an anti infective agent that is to help protect his lungs from a common pneumonia that can occur in immunosuppressed patients. It is standard to start it around Day 28. He also got to start a multivitamin today. Wahoo!! Something normal.

Naps happen daily when not at the dr. and travel only happens to and from the dr'.s office. Otherwise, Jeff isn't interested in going for car rides etc. He hasn't gone into a store which really doesn't bother him for 6 weeks or more. He has had to sit in the car and wait for me to go into the store for food items or pharmacy items only.

Kind young men and young women from our ward came and spent about 90 minutes raking our yard, cutting and stacking wood, and digging yuccas this last Wednesday. It was such a blessing to have them here. It helps take some of the burden off of me!!! They gathered about 50-60 black yard bags full of pine needles and cones. The laughter and hard work they gave was phenomenal. That's all folks. Have a great weekend

Day 23

This is Nanette "blobbing". It is nearly the end of another day; Jeff has been slightly less fatigued today. He didn't let you know that he gets IV fluids at home everyday. A home health nurse came to show us how to operate the pump. Because of what has been done, his electrolytes are out of balance. One that is going to stay out of the "normal" range for awhile--2 months or so according to the nurse practitioner--is magnesium. So, our bottom level of the refrigerator is filled with a week's worth of IV fluids. They adjust amounts and volumes according to what his labwork shows when we go into the Dr.'s office. Each morning I hook him up for about 4 hours. Then he is free for the rest of the day. Today he walked outside for about 20 minutes. We would've done more if it hadn't been so cold. Jeff didn't tell you, but one of the things that a caretaker of a bone marrow transplant patient has to do is handle all of the food, cook it, and clean up. He isn't to help at all due to the possibility of bacteria or fungus. Now that doesn't sound like a big deal, but---I haven't cooked three meals a day for about 4 years. He isn't allowed outside food from restaurants yet either. He has to have a bone marrow biopsy monthly for awhile. The dr came in on Tues. and sat by me, but asked him if he wanted conscious sedation---he meant for the bone marrow biopsy. I said yes. He said he wasn't talking to me. I said I know but that I want conscious sedation because I have to cook three meals a day. I thought it was pretty funny, but the dr didn't crack a smile. He isn't our "normal" dr. Oh well. I am just thrilled to have him home! Our home was just a house with furniture in it while he was in the hospital. Now that he is here, it is so enjoyable. I wouldn't want to be anywhere else doing anything else. He is a fighter and a trooper. I don't know how I would behave with all he has had done to him. Love you all!! Thanks for your support. We'll keep blobbing at least 3 times a week.
Oh, two more awesome things--Cory and Adam put on craigs list something about getting a wii for Jeff and this man responded and now we have one for Jeff to play and have something to do besides sleeping and reading. It was so wonderful of them to think of Jeff!! Cory and Adam are great people who we are so happy to be related to. Sue came up to help me make meals to separate into single meals so that Jeff has choices about what to eat. They are already cooked, so just have to be thawed and warmed in the microwave. It took all of one afternoon. Wonderful sister!

Day 22

I guess I will try and continue the blog due to popular demand. I am thinking about a weekly update. The transition home has gone well. Nanette is doing a great job taking care of me. It is a full time job right now.

We had doctor appointments on Tuesday and Thursday. My blood counts have increased dramatically this week. Platelets went from 19 to 106. Red blood cells went from 28.2 to 34.5. White blood cells went from 1.1 to 5.0. My ANC went from 440 to 2600. I told the nurse practitioner that this isn't my blood and she agreed with me. She said it was my donors blood made from the new bone marrow.

I still have some issues that I am dealing with. There are some noises in my lungs that seem to be resolving. I cough deeply to try and clear the lungs and I am also on antibiotics. My appetite has been poor and I have been forcing myself to eat. This is just improving slightly as I had smoked turkey yesterday and ham today. Fatigue is another problem that I am to expect. The problem is that expecting and dealing with fatigue are 2 different things. I can take a 2 hour nap and still be tired. I also find myself sitting in a chair for 30 minutes or more and not wanting to move until my bladder says it is time to move. My most difficult challenge has been the bowels. The diarrhea has decreased significantly but my body will not shake whatever is causing loose stools. It could be the chemo, my electrolytes out of range, the transplant and many other things. The doctor's don't have a fix all cure. It sounds like I deal with this until my body fixes itself. Take care. Hope you had a good week.

Day 18

We just met with Dr. Matous and I am going home today. Nanette is loading the car. It will be several trips for her. We are hoping to be gone by 4PM. Tomorrow we have an appointment at 9AM at the clinic and that will become our new life with at least 3 visits per week for a while. They will take blood and see if I need any blood products or mineral replacements. This will end the blog. Thank you for your support and prayers. Take care. Jeff

Day 17

Just a short update because I am tired and it is getting late. Overall a pretty good day. The diarrhea is under control and the mouth sores are pretty much gone. I have a slight fever that I seem to get every afternoon and then it goes away during the night. I have a cough from some nasal drainage. The swelling in my ankles has reduced to where they are almost looking normal. I saw Dr. McSweeney this morning and he thinks things are going well but would not send me home tomorrow due to my white blood cell counts. He knows it is my Doctors call since Dr Matous will be the hospital doctor all week. We will see what happens tomorrow morning. Here are my counts: platelets= 16, red blood cells =28.8, white blood cells ANC 400. The ANC count decreased from yesterday but the total white blood cells went from 600 to 1000. I am not sure how to read this. I will ask Dr Matous tomorrow. Take care. Jeff

Day 16

I had a pretty good night last night. I was able to sleep well between interruptions. The diarrhea slowed down and remained under control until this morning. I took a dose of opium this morning and the diarrhea seems to be back under control. My body decided to dump fluids on its own so I urinated all night. This is good because the swelling in the legs and feet are going down. The doctor did not have to give me lasix since my body is doing it on its own. This is the result of the white blood cells forming and reporting to duty. I do have a cough which is new. Here are my counts: platelets=14, red blood cells 23.8, white blood cells ANC=528. I did require 2 units of blood last night since me red blood cells were below 24.0.

I saw Dr McSweeney this morning. He had nothing exciting to say. He noted the increase in my white blood cells but said he has seen better. He is not very motivational. Dr Matous will be the hospital dr next week, so that will make us happy.

This is Nanette now. It is 1:30 and I just got here. I have snow blown at least 20 inches of snow. It is still snowing cats and dogs down in Parker. As I got closer to the hospital, the snow changed to rain. The winter storm warning was to expire at noon, but they extended it for Douglas county--Parker and south until 6pm tonight. There are to be around 5 more inches of snow before it stops. I didn't get here yesterday, and wondered about today. The plow came through this morning. It took me an hour yesterday and an hour today to snowblow. It is Colorado cement!! Heavy and wet!! I was so glad to get here and see that Jeff isn't hooked to any iv pump or pole except for when he gets blood, electrolyte replacements, and his antibiotic. He looks naked without it. Happy trails to you. I am thrilled to be here today. It felt really weird to be gone from 4pm Thurs until today...not normal at all.

Day 15

I had a pretty good night last night. I slept well and the diarrhea was minimal. I didn't get any blood products but will most likely need red blood cells tonight. Here are the counts:
Platelets=20, red blood cells 24.1, white blood cells ANC 440.

I saw my Doctor this morning. He says he will send me home if I am doing well Monday morning. I am going to be IV pole free shortly. They are stopping the IV tacrolimius and going to pills this evening so I will only be hooked up when getting antibiotics or blood products. It will be nice to not have to drag the IV pole everywhere I go.

It is snowing like crazy out my window. Nanette decided not to try and come today since the roads are bad and there is a winter storm warning for lots of snow. I walked for 30 minutes today and am eating OK. I still do not have an appetite but force myself to eat. They were counting my calories but discontinued counting this morning. That's the update for today. I just need to resolve the diarrhea issue and life will be great. Take care.

Day 14

The internet started working again this afternoon so we are back in business. I had diarrhea most of last night. It stopped around 8AM this morning and has been under control since then. I am being careful the kind of food I eat in case it is a factor. Hopefully it will stay in control this evening. The doctor thinks it just may take some time to heal my intestines from the chemo. As the white blood cells build they will do their healing thing. The doctor and nurse practitioner were the same ones from yesterday. They said I would not be going home Friday. Their two concerns are the diarrhea and they would like to see the white blood cells above 500. Here are today's counts: Platelets=23, Red blood cells 25.3, white blood cells ANC=450.

We were given our discharge teaching this afternoon. Nothing that we haven't read in our books except I will not be allowed to have fountain drinks. The concern is that they do not clean their lines so bacteria may be lurking. Nanette left about 4PM and is having a cleaning party at the house tonight. So I have a quiet evening ahead and will watch "the office" and go to bed around 9PM. Take care. Thanks for reading, your comments, and your prayers.

Day 13

Sorry for no update sooner. The internet isn't working at the hospital and I just got home. Maybe a hold on the discharge as Jeff is experiencing a lot of diarrhea and abdominal problems. The dr today seemed a little more hesitant to let him go home. They are going ahead with the discharge teaching though for both of us. All of his prescriptions have been called in and I am to pick them up tomorrow and bring them to the hospital so the pharmacist and nurse can go over each one with us, tell us the reason it is being given, how important it is to be given on time....We will have to bring all of his medications to the office visits the first month to let them know we know what we are giving/taking, when and why. They had Jeff go down for an abdominal xray today and did some more lab work. Otherwise, he is taking a lot of his medications by mouth even though his throat is sore. They also started a calorie count today to make sure his intake is adequate. Liquids are still the easiest thing for him to tolerate. Ensure and milkshakes are his best friends at the moment. We'll let you know more tomorrow. Don't have his counts with me at this time, but I know his ANC went down some. We need the dr to be a little more forth coming to talk with us and let us know the plan. He is from New Zealand and has a thick brogue. Nice enough, but doesn't talk much. At this stage in the game, words that they say are really important to both a patient and family. Those are the things we hold onto. Thanks for all of your love and support!!

Blood counts: Platelets=23, red blood cells=25.8 , white blood cells ANC=350

Day 12

Today is a wonderful.....scary day. Dr. Matous came in today to discuss with Jeff the possibility of going home Friday....Needless to say, we both have had apprehension that was alleviated some by cornering him in the hallway with another wife of a patient who is being discharged Thursday, and asking many questions of him. He wanted to run the other way and stated, "I know there isn't another way out of here."He acted like it wouldn't be a big deal for me to take care of him, and I said, "This isn't my area of expertise; also, it's like taking home a brand new baby." There is a boatload of information that is to be thrown at us the next few days along with plenty of support, but it is interesting how we both are nervous and scared. He also said things can change if there is a fever, he can't keep food down or take his medications by mouth......Today they have switched over some of his iv meds to oral. They placed a fentanyl patch on him for pain management and will take the pump away in about an hour. If this patch doesn't handle his pain, they will make other provisions and changes to help him. Jeff actually ate most of an omelet today. Otherwise, his meals are still the same with ensure, milk shakes, and soup.
Each person who has come in this afternoon has said, "Hey, we hear you get to go home on Friday." His nurse, Esteban, said he could tell there was concern in his Jeff's voice---about those words. Nap, walk, and shower took up this afternoon. Lasix to remove extra fluid both morning and night have been given. His chest xray and echocardiogram were clear. I haven't done any cleaning at home since Jeff has been here. That needs to change as it has to be clean for HOMECOMING. He still has "Kankles." That is today's update with numbers to follow. Thanks one and all!

Platelets--19; Red blood cells--28.8; White blood cells--0.5; ANC--400

Day 11

When I talked with Jeff this am on the phone, and asked how he was, he said,"Pretty good." It has been at least 12 days since I have heard that response. He slept well last night. Stated he thought his night nurse was actually retarded. Dr Matous came in this am and announced, "We have some engraftment." His absolute neutrophil count is 280. That is one part of the white blood cell count and the one that is most telling for the dr's. "0" was what we wanted for awhile because of the chemo--to kill the wbc's and now the goal is increasing neutrophils. He said we need to start to watch for graft vs. host disease now. That is what will be the biggie for the next 100 days and on. The first 100days is the acute period of time and then they call it chronic graft vs. host following that time. Fevers, skin rashes, gi problems and liver problems are what we are concerned about now. He got to leave the floor today for his chest xray. Lovely lasix was again administered to help get rid of extra fluid. Also compression stockings are on now to try to help control the swelling in his feet. An echocardiogram was done this afternoon to see if he has any extra fluid around his heart. He is only taking the tincture "as needed now." He has only had one dose today. Platelets were given again this afternoon. Sue came up from Monument. She liked seeing how well he was doing. Jeff's responses are appropriate and his speech is clearer today. That makes me feel better as well. We just walked 15 min. and now he is getting his antibiotics. I did my first load of laundry in 3 days today. That is a record!

Platelets--21; Red blood cells--29.8; White blood cells--0.2; ANC--280

Day 10

Happy Easter! The doctor came in today while I was here. There is a small possibility according to the lab work today that Jeff might be having some early engraftment. He said that goes with the labwork and how the patient feels. Jeff has been almost diarrhea free for 18 hours. They want him to give his weekly poop sample--they gather one each Sunday--but so far, he isn't able to give them one. Dr. also said his numbers will probably go back down with him getting his last dose of methotrexate tomorrow. After that there should be a slow steady climb of white blood cells. That was really fun news to get. He cautioned us to take it with a grain of salt as this ISN"T an exact science. Two units of packed red blood cells have been given this afternoon even though his rbc's are not below 24. The dr. wants them on board before the methotrexate tomorrow. His big Easter present was a different soda pop today. We walked for 15 minutes this morning. He is taking less opium today.

Deanne typing now...Monica and I are here again, we brought the boys and Grammie is out playing with them right now while we visit with dad. He's feeling lots better today, which is good to hear. He's getting some blood right now, so amazingly enough his face has good color right now, his nose is even a little pink! :-)

Ta-ta for now, dozing off...

Platelets--19; Red blood cells--25.3; White blood cells--0.2; ANC--80

Day 9

Today has been much the same as the last few with one FINE exception---A LOT FEWER POOP problems!!!! It has been 11 days of royal pain in that arena. Today Jeff is having about half the amount as has been the norm lately!!! Platelets were given this pm along with quite a few electrolyte replacements. All of his electrolytes except magnesium have needed to be replaced today. We have potassium, sodium, phosphorus, calcium, magnesium, chloride. There is a very narrow range that is considered "normal" and if one goes outside that range, there can be fairly significant problems. They are very good here at replacing him. He hasn't had a good appetite, but that is okay. Both Monica and Deanne came today for a period of time to see him. Jeff came out of his room and to the "family visiting room" for about 5 minutes to see Mikey ---and just to be out of the room. Lasix was given in a smaller dose today.--20mg iv as opposed to 40mg that he has gotten for the last two days. His feet and legs are still quite swollen. Today has been a "good nursing day". Lisa is his nurse and they clicked right away. She listens to him and isn't into power and control. That has worked really well for him. He needed to have her today. The girls all pitched in to get him a digital picture frame. He was trying to figure it out this afternoon. With the drugs on board, that has been a challenge. Encouraging him to drink/eat is a challenge, but I am mostly trying to let the dietician and nurses be the "bad guy." Otherwise, I am nagging. His hair is also falling out which isn't too traumatic for him. He has a great looking head. Deanne's birthday is today. He tried to sing to her, but that was somewhat difficult with his mucositis---mouth and esophagus sores. He just sounded a big froggy is all. She was grateful. Well, the gift of Easter is tomorrow which gives us an abundance of gratitude and hope!! Thank goodness for the Atonement, or this life would be for naught. So long for today. The numbers follow:

Platelets--18; Red blood cells--26.8; White blood cells--0.1; ANC=0

Day 8

More of the same things today. Diarrhea out the yingyang for Jeff that kept him going all night long. The tincture of opium went from 4x a day 3 days ago to every 4 hours yesterday to every 2 hours today. They are trying to get something to work. They told him not to even use the immodium at all. Breakfast was a ensure, applesauce, yogurt and a shasta cola that he opens to let the carbonation out prior to drinking. Lunch held a chocolate milkshake. He didn't take a nap until about 3pm because of the lasix that they gave him. He was urinating every 5 min for about two hours. I posted the sign on his door to leave him alone. That didn't work so well today. I felt irritated at the 2 nurses who came in to hang antibiotics and all. They could've waited until 4pm but didn't. I held my tongue but felt ticked inside. He had a couple of run ins with his nurse today about things that really shouldn't be that big of a deal. But he and I are obviously feeling way out of control and it obviously is getting to us. The dr said he is doing well. He said that next week is when his body should "kick in" and that he is going to think that the dr next week "is the most brilliant man and what was wrong with the bozo last week." Pretty funny. But that is when things should change for the better--between Wed and Sat they said. I am making him go walking now since he hasn't done any exercising in the last 3 days. He isn't thrilled, but is going to do it. Shower is next.

Platelets--18 Red blood cells--29.6 White--0.1 ANC 0

Wahoo. 10 minutes of walking!! Slow but steady.

Day 7

It's Nanette making this post. I have been here today since 1100 and he has slept most of the time. That is exactly what he should be doing. He most certainly isn't supposed to be the entertainment committe. He is awake now and looking over the paper. The fentanyl and the opium are making him pretty tired along with having no white blood cells. The diarrhea has settled down temporarily. He had a dietician come to talk with him about his calorie intake. She suggested that he do ensure and boost each meal because they contain a lot of calories and don't involve a lot of chewing and swallowing. He is listening. Another first today. A massage therapist came in and massaged Jeff's very swollen feet. It brought some temporary relief. He has never officially had a massage before. He elevates his feet in bed with 2 pillows. More lasix was given today to help rid the body of some excess fluid. He has fluctuated in weight from the first day of 194 down to 188 and now 202. It makes it less than desireable to walk. He hasn't exercised in 3 days. Great joy for me. I don't have to gown anymore when I come into the room! They said I didn't have to glove, but that "just doesn't seem right to me" when he has no white blood cells. I was grateful for the girls to come see him yesterday since I had to work. It was somewhat difficult to concentrate and take care of other people when I knew he was in the hospital....The dr said today that their job is to make him comfortable during this period of time when we are awaiting the growth of the new blood cells. Thanks for all your kind words and thoughts!! Prayers too!!! He attitude is good! Love you.

Oops Numbers again:

Platelets--24. They aren't going to transfuse anymore unless he is below 20. WBC 0.1. Red blood cells--23.6. He got 2 units of blood overnight as well as the typical electrolyte replacements. ANC is 0.

P.S. Paxton was circumcised this am. He was weaned off of all monitors over the course of the day yesterday. She got to nurse him for the first time last night. They get to take him home today if you can believe it!!!!! Yahoo and hurray. Man, can baby's change quickly. The Lord answered all of our prayers.

Day 6

This is Deanne typing for dad again...Monica and I came during our lunch because mom is working today.

Fairly good night last night, decent sleep about 5 hours uninterrupted (diarrhea free). Midnight it started again. I was up every 30 minutes going to the bathroom. Last night I got platelets, and some other junk for electrolytes. I'm getting platelets every 12 hours whether I like it or not. Saw the doctor this morning and they are giving me lasix because I'm retaining fluids in my feet. Getting methtrexate this afternoon and day 11 (a small dose of chemo) that helps prevent GVHD, this also gives mouth sores...once the white blood cells start coming up, that will help with the mouth sores. The doctor says that the mouth sores are from a virus, not the chemo. So I'm taking medicine for the virus, can't recall the name of it right now.(Acyclovir)

I'm getting the opium 4 X a day, it's the nastiest tasting stuff I've had. It has to be taken orally. But, it seems to be doing the trick and slowing down the occurances of diarhea. Mom talked to the pharmacist at her hospital and based on the symptoms they said that it's the right treatment.

The mouth sores are making it hard to talk and eat or drink anything. His feet look like (these are his words) Fat Albert's...at least he's making jokes still!

Red blood cells: 24.3 Platelets: 17 White Blood Cells: 30

Day 5

Hello everyone,
The fentanyl pca is working well to handle Jeff's pain. It makes him drowsy though, so he is considering asking them to turn down the amount some. The dr was in and said main goal at this time is to protect Jeff's organs and organ systems so they don't shut down. He has quite a bit of ankle swelling. They have decreased his iv fluids. Everything except immodium is iv. Also, his platelets have been so low that the order is to transfuse platelets to him every 12 hours for 48-72 hours. One other item. His bowels continue to flow at a rapid pace, so they are starting to give him tincture of opium every day. He hasn't had his first dose yet. It is a heavy duty thing drug that pharmacy makes to slow down the motility of his digestive system, so he maybe can absorb some of the nutrients that he is taking in and not flushing them immediately through the gut. Mouth sores still very sore!!!

Platelets--8 Red blood cells---27.2 WBC---0.1 ANC---0

Wahoo for Mimi and Todd and baby Paxton born at 4:11 am this morning our time. He is in the
nursery as he isn't pumping the blood to his extremities well. Hope to hear from them later today for what the pediatrician's plan is.

Day 4

New hospital doctor for the week is Dr. Brunsbaugh. He came in to see Jeff this morning and was going to change some things for him. The biggest thing that has started is that they have Jeff on a PCA which is--patient controlled analgesia. He is receiving fentanyl. It is mostly for his mouth sores. He has a constant amount that goes in over each hour and then he has what is called a demand amount that he can push when he has either extra pain or to help him when he is eating. Maintenance iv fluids continue. He received platelets last night and other electrolyte replacements. The interesting thing the dr said was quite possibly some of the diarrhea could be due to the destruction of the cancer in the abdomen and the abdomen now trying to deal with empty spots--a new landscape. He encouraged Jeff to keep eating and keep taking as much immodium as he needs to each day to try to stop it. He can take 8 pills per day. His last diarrhea was at 0830 this morning which is great. It is about 1:15 now. He only has 4 more pills that he can take today. The other big thing today was that Jeff got to leave the floor to go down for a chest xray. Each Monday, they standardly do one. He hasn't left the floor in 12 days, so that was good for him. He had to be gowned, gloved, and have a mask on as well. We walked for 10 min this am. He is feeling weak and tired, but a good attitude the majority of the time. Our thoughts have been about Michelle today as well. --a lot. Two people in the hospital at once is a lot...
The hope is that both will have a glorious outcome. We'll keep in touch.

Oops, here are his counts today:
Platelets--4 ANC-134 red blood cells- 26.2

Day 3

I was waiting for my secretary Deanne to arrive and dictate this to her but she and Monica can not come today since Monica is sick. Since I have no white cells it is dangerous to be exposed to someone sick. Deanne has been around her so she is protecting me also.

I had a good night last night. I am now taking Imodium for the diarrhea. It really helped last night and I finally got a decent sleep. A new problem started. I have some small mouth sores from the chemo. They are pretty insignificant but one seems to be near where I swallow food so it is making eating difficult. I am eating soft food and liquids.

Blood counts: Platelets 3, white blood cells 180, red blood cells 21.9. These counts entitled me to 2 units of blood and one of platelets. One interesting thing is that they give me o- blood now since I will transition from a- to b+ during this process. O- is the universal donor. I saw the doctor this morning and he said that I am doing great. Of course I do not feel like I am doing great. He says how you are feeling and how you are doing are different in this case. Small consolation as I sit on the toilet with a sore rear and can't swallow.

Today has been pretty good. Some diarrhea action this morning controlled by Imodium. Nanette & I watched the afternoon General Conference on the lap top. Walking in the hall for 10 minutes about wore him out. Jeff is up around in the bedroom for a little bit, then he sleeps for 15-30 min. I told him that is what I tell my patients to do. ..Be busy, then rest. His attitude is pretty good. He got a dose of methotrexate this afternoon and is still on antibiotics. Doing laundry is a daily occurrence around here. No worries though as it is just down the hall. It is shower time now and then he is going to try iv pain meds--fentanyl--to help him eat some dinner without pain. He is nervous about doing that, but the nurse and I convinced him that to eat and not have pain is better than worrying about falling. I will be in the room the whole time to monitor him and make sure he doesn't fall. That's all for now. Sionara Love to you!!!

Day 2

This is Deanne writing for dad.

It was another tough night with lots of diarrhea and now mouth sores...I noticed mouth sores about bed time and the nurse checked them out, gave me some miracle "warsh" (wash) to help out with them. The doctor could not see them this morning so I think the wash helped out. I got platelets, potassium, and magnesium during the night.

We were supposed to have a big snow storm last night and it didn't materialize, just got a spitting of snow. Nanette is staying home and taking the day off. Deanne is here right now helping out and Monica will be here later in the afternoon after the big switch off of the kiddos! Saw the doctor and nurse practitioner this morning and asked them for Immodium to stop the diarrhea. They finally consented to that, and the diarrhea is seeming to slow down (which is a good thing). The doctor said that this will pass, he thinks the reason for the diarrhea and mouth sores is because of the high dose of chemo.

Ok, now it's Deanne. I went and tried to start the laundry but someone has a crap load of clothes to do so I haven't been able to get to it yet. He has been lying in bed most of the time I've been here, besides getting up to go to the bathroom and eat a small bit of food. His eating consists of a small portion of food at a time, i.e. he ate a 1/2 of an english muffin and a pop...slow eating so he does not overwhelm his stomach. Mom called to "check in" a little bit ago. I rode his exercise bike for 7 minutes or so, but this gown and gloves gets you so hot that I had to stop...I didn't want to be sweating when I took a shower this morning... :-) The retry time for laundry is 11:30 and I will be refilling ice, pop, and getting myself something to eat too. The food room is pretty cool here because there is a variety of food and drinks that we're allowed to eat...funny story, the first time Monica and I were here and mom and dad told us to go get food and drinks. We were scared to go in there b/c we thought we'd get in trouble, and we got caught by a nurse!! So the next day I told them no way no how I will not go in there b/c we're gonna get in trouble...there was a nurse in the room and she said that they were the only ones that get in trouble if they eat the food! Phew! That would have stunk getting kicked out of the hospital!!

Blood counts: platelets 8, white blood cells 270, red blood cells 27.1

It was surprising that the white blood counts went up. I asked the doctor about it and he said not to take it as a positive sign yet, there's a good chance that it will still hit zero before the stem cells start working.

Day 1

Well I made it through another night. The first half was good then the 2nd half bad. I was able to sleep the first half and my urinary tract problem seemed to be fixed. The second half of the night I got diarrhea again. Now I couldn't sleep and was getting up from the bed every 15 minutes. I trying to increase my fluids and eat a bland diet to get this under control. I may not be able to, it may take until my white blood cells start to come back.

Blood counts: platelets 11, white blood cells 160 , red blood cells 28.7
They are saying we are in a watch and see game right now. If all goes well my white cells should decrease to zero then start building up when the new bone marrow en graphs and starts working properly. 160 is quite low so I am open to infection. They are giving me 2 antibiotics just as a precaution.

I walked for 15 minutes this morning. I will try and do more later. It is tiring just typing this blog. That's the fatigue from the white blood cells being so low.

Nanette and I figured my rebirth was at 11:17AM 2 April. That is when the last bone marrow stem cell entered my body. Now we just have to get the 6 million little buggers to start working without my body rejecting them.

Jeff walked twice today for about 15 min at at time. He is still battling diarrhea a lot which makes it difficult for him to want to eat. I am forcing him to get something in every hour--popsicles, applesauce, crackers, juice...I am suggesting to him to have mashed potatoes, english muffin, bagels...He isn't really excited about anything. He is losing weight, but is still being willing to be henpecked about eating. He just got some zofran--antinausea meds--to help settle his stomach.
There is supposed to be a really big snowstorm tonight; both Deanne and Monica are planning to spell me tomorrow. They want the chance to serve their dad and to be with him. Using hospital bottoms is working better at this time rather than Jeff's own clothes. I have been running a load or two daily. There is a washing machine and dryer here for patients and families to use with very strict instructions on cleaning following each load of laundry. Clorox bleach needs to be run with water only following a load of patients clothing along with bleach wipes on the tops of both the washer and dryer. While in Jeff's room, any visitors need to be gowned and gloved following a vigorous handwashing at two different stations. It was pretty interesting wearing a gown and gloves to bed over my pajamas two nights ago. This is it for us today.

Day 0

Day 0:
It is 1042 am and Jeff is getting his cells now!!! They premedicated him with benadryl, ativan, tylenol, solucortef prior to the transplant. We both have been a little emotional this morning prior to the cells being given. The doctor started them dripping at 1005. Jeff was up for good at 0645 and has just been in the waiting mode until the doctor and nurse came in for the giving of the cells. He is getting one bag of cells---but there are 6 million of them! They collected 12 million from the donor. There were only 3 million needed--per the nurse this am. The lady who was here last night to receive the cells and check them told me that they were "beautiful cells." She also said the courier had a message from the donor. "My prayers are with you and I hope this gives you a new chance at life." Of course I cried. Jeff just said we will officially count it as his birth when the last cells go in. Want to make a bet on the time? Thank you--all of you--for your prayers and kind thoughts. We know without a shadow of a doubt that they are heard by God!!

Blood counts
Platelets 12 Rbc's 29.8 WBC .3

day -1/2

Last night was much better. They gave me the ATG (rabbit stuff) and I did not react at all. No temperature or anything. I got decent sleep during the night. To help out they ran the ATG into me at a slower rate and changed the timing of the premeds. Anyway it worked. I did get platelets during the night as my platelets dropped below 10.

Blood counts. Platelets=9 White blood cells=.4 Red blood cells=28.6

I am officially neutropenic today so they are going to start some antibiotics just in case since I am more prone to infection. My stem cells (bone marrow) are supposed to arive sometime tonight. Dr Bearman said they will infuse them tomorrow morning because the shelf life is 48 hours. So it looks like my new birthday will be 2 April.

Nanette will arrive about 1PM today. I walked this morning and will go out for 20 more minutes now. A hospital chaplain and dietician paid me a visit today along with the nurses, doctor & nurse practioner. Never a dull moment.

The day went downhill from there. Diarrhea, temperature of 102 and urinary frequency started and continued throughout the night. They took urine and stool samples and started Jeff on both intravenous antibiotics--cefepime as well as oral levaquin. I stayed overnight with him. He was up every 10-20 minutes to the bathroom. I have run 2 loads of wash since last night. His appetite isn't good at this point. He is doing the brat diet at this time. So long for now.

Day -1

I had a very tough night last night. I started reacting to the ATG around 8PM 5 hours into They slowed it down but I had a temperature, low blood pressure, low oxygen and had to get 2 units of blood because my red blood cells are low now. The nurse was in and out of the room all night long working on me and calling the doctor. They say that 75%of the patients have the type of reaction that I had last night. They are hoping it will be better today as I get another dose this afternoon. I feels like I have been hit by a truck. I started feeling better about 5AM when my temperature went down and my blood pressure went up.

The nurse started me on another anti rejection medication today. It supposedly does not have all the side effects of the ATG. Tacrolimus (also FK-506 or Fujimycin) is an immunosuppressive drug whose main use is after allogenic organ transplant to reduce the activity of the patient's immune system and so lower the risk of organ rejection. It is also used in a topical preparation in the treatment of severe atopic dermatitis (eczema), severe refractory uveitis after bone marrow transplants, and the skin condition vitiligo. the infusion.

I think I will get some of it this morning and more later in the day.

Blood counts. Platelets=15 White blood cells=1.2 Red blood cells=22.5

I did get the Tacrolimus all all day long. No reaction to it. They started the ATG again and it went much better. I will put it in tomorrow's blog.

Day -2

I had a pretty good sleep last night. Chemo finished around 11:15PM and I went to sleep for an hour. The nurse had to take blood at 12:30AM to "type it" in case I needed a transfusion so that was my first wake up call. I got up almost every hour to go to the bathroom but fell asleep each time. I finished my last chemo this morning. It was melphalam which I have never had before. They had me suck popsicles and ice during the 30 minutes that they gave the chemo. This is to try and reduce mouth sores.

I walked for 65 minutes but may be done for the day. I am getting my premeds before they give me the ATGAM (ATG) rabbit stuff. It will be benadryl, solumedrol & tylenol. They say that this will not be too much fun to get the anti rejection drug. I get it today about 4PM and then again tomorrow. The stem cells (bone marrow) are still scheduled for 1 April Wednesday but they said it could happen Thursday depending on the arrival time of the cells.

Nanette came around 10AM and Monica & Deanne came by during their lunch hour. It snowed about 3 inches down south in Parker so Nanette had some traffic trying to get here in the morning. She is going to stay later tonight to see how I react to the ATG.

Blood counts. Platelets=26 White blood cells=3.0 Red blood cells=25.2

Day -3

I woke up about 7:30AM for good this morning. The sleep was pretty good. The nurse was slightly disorganized and didn't finish my chemo until 11:45PM last night. We thought I would need blood but my red blood cells stayed the same. My calcium was low so I got an IV bag of it around 5AM then vitals and something else at 6AM. You just have to try and go back to sleep in spite of the interruptions. I walked for 25 minutes this morning and saw Dr Riftkin again and his assistant. They think I am doing fine and to keep pressing on.

Blood counts. Platelets=24 White blood cells=2.5 Red blood cells=24.4.

I started chemo again this morning at 8:00AM. It is exactly the same as the last three days. This is my last day for this and the chemo drug changes tomorrow. They also said I would get a dose of: Anti-thymocyte globulin (ATG) is an infusion of rabbit-derived antibodies against human T cells which is used in the prevention and treatment of acute rejection in organ transplantation. I will get some premeds like solumedrol, benadryl & tylenol to reduce the chance of allergic reaction to this ATG. The ATG will be helpful on Wednesday when I get the new bone marrow stem cells. Nanette is coming to visit this morning, then Sue, Monica & Deanne later in the day. I will take another shower when Nanette gets here and she can make sure that I clean my line like I was taught yesterday.

Disregard the ATG starting tonight. The nurses called Dr. Matous and he said to start it after the chemo is done. He did not want it interacting with the chemo. So I will get the final chemo tonight like I have been for the last 3 days. I will then get a different chemo tomorrow and then the ATG tomorrow afternoon or evening. I have to be flexible for these changes. So far no insulin shots today. I had a milkshake and lots of carbs for dinner so will most likely require one tonight. They are strict about my blood sugar because they feel high blood sugar increases the likelyhood of infction because it gives the infection sweets to grow faster. The chemo should start at 8PM but I have the same nurse as last night so it will be slow again.

I finished my walking for the day when Monica and Deanne left. They stayed around 3 hours and brought some paper airplanes and drawings from Mikey and Brendan. One funny thing happened the first day. Nanette was busy wiping down the whole room to make sure everything was spotless. I brought some tennis shoes from my closet that were new and not from when Brooke & Deanne were running track. I guess a mouse visited my closet and there were mouse poops in the shoes. Nanette was disgusted after cleaning so hard. She wiped the shoes down so everything should be fine. That's it for today. Hopefully I can get some decent sleep tonight but I am not counting on it. Thanks for your support and prayers.

Day -4

No problems last night. I got lights out by 11:30PM and woke up for good at 7:15AM. I did not get any blood products last night but I am getting close on the red blood cells. They said to expect a transfusion tonight. They transfuse when below 24 and I am at 24.4.

Blood counts. Platelets=27 White blood cells=3.1 Red blood cells=24.4.

I was disturbed from my sleep a few times due to the fluids and a full bladder. The machine also beeped at 3AM and 6AM so it is tough to get much uninterrupted sleep. I will try and get a nap today. I am getting my morning chemo treatment this morning. No insulin shot since I go right back into the normal range once the steroids wear off. I did get steroids again this morning as a premed before chemo. The premeds and chemo are exactly the same as the last two days.

I saw Dr Rifkin this morning. He says I am doing great and to keep up the exercise and good attitude. Lungs are still clear and he will order some lasix since I have gained 3 pounds of water weight. I walked for 25 minutes this morning and have been averaging 75 minutes a day.

Nanette is supposed to arrive about 10AM and she will do my laundry. They have a washer and dryer near the family room area. I get blood drips on my shirts when they change the lines. They try hard to avoid them but it is tough. I will also get the dressing taken off my line today and get to take a shower. We are going to do it when Nanette gets here so we are both trained on taking care of the new line. It is nice since there is no pain involved to access it. Monica and company are going to come after 2PM so I can hopefully get a short nap in before they come. The grand kids can not come on the floor but I can put on a special mask, gloves, and robe to go to the family room and see them. We are not limiting adult visits since my white blood counts are still good. We will most likely limit visits one they drop dangerously low which is part of the transplant procedure.

All my visitors have gone. Monica, Deanne, Jeremiah, Brendan & Mikey came by for a couple hours. The kids were not allowed in the room and I had to wear a special mask to see them. All the adults were allowed in the room since they were not sick but they had to be gowned and gloved. The dressing on my line came off and I got to shower. They showed me how to clean the line and I will try to do it tomorrow with Nanette's help. The doctor increased my lasix dose so I have been going to the bathroom alot. So far a pound of weight has come off. We have been watching basketball today on TV. I am going to order dinner then go out and walk for my last 15 minutes today. I still need to read the news paper. I thought that I would be bored here but I seem to be keeping busy. I took a 30 minute nap this afternoon between bathroom runs.

I just got my last chemo for the day started at 08:30PM so I should be done around 11:00PM tonight. The nurse said that if I need blood she will start it around 4AM so I will get some sleep before she has to do it. Hopefully I will not need it but I am very close so will probably get red blood cells tonight. That's it for today.

Day -5

It was a short night last night. Went to bed at 12:30PM and woke up at 7:30AM. I was up every hour going to the bath room because of the chemo being so late and all the fluids. I saw Dr. Matous about 8:00AM this morning and he is going to move up my chemo to 8PM so I am not up so late. That will be helpful. I just got more lasix this morning to keep from swelling up due to the fluids. No insulin shot because I am in the normal range this morning. That will most likely change by lunch after the steroid premeds I got this morning. Time to go to the bathroom the lasix is kicking in.

Blood counts. Platelets=34 White blood cells=3.4 Red blood cells=25.8.

I am just finishing up my chemo for the morning. The premeds and chemo are the exact ones they gave me yesterday. The blizzard is over and the sun is out melting. Nanette said we only got about 10 inches at our house so she will not be snowed in. She has to snow blow then has a hair appointment. She should be in here around 2:30 PM and the roads should be melted by then.

Physical therapy visited this morning and adjusted my stationary bike. She also gave me a sheet to keep track of my exercise and a rubber band type thing to work my arms. The hospital chaplain came after lunch and visited for 15 minutes. She was nice and offered to help in any way she can.

Nanette arrived about 2PM and stayed until 8PM. We walked right away for 30 minutes because I was unhooked from my machines for a while. I got in 75 minutes of walking today. I started my second round of chemo about 8PM tonight. I should be able to get to sleep about an hour earlier, maybe 11:30. I got an insulin shot this evening. One of the chemo drugs has a sucrose base and it causes my blood sugar level to go up in the evening. That's it for tonight. We will do laundry tomorrow. Nanette & I met the wife of a patient today. They are from Billings, MT so she stays in a hotel at night. We are fortunate to not have to commute from too far. Nanette can go home each night if she wants. Take care.

Day -6

Dr. Matous arrived bright and early as I was waking. He examined me and started me on lasix. It is to keep me from retaining all the fluids that they are giving me. It makes me go to the bathroom every 30 minutes. I have to measure my urine every time I go to the bathroom. I also have to record my intake of every liquid I eat or drink. The records showed that I was retaining fluid so the doc ordered the lasix. He also said my blood sugar level was slightly high and they are very strict on this unit. The premeds are causing the high sugar level. Before every meal they check my level and give me a shot of insulin. I can't even feel the shot so no big deal.

I had chemo at 9AM this morning. The premeds are the same as yesterday zofran & dexamethasone. The chemo for today and the next 3 days are etopiside (vp-16) and ara-c (cytarabine arabinoside). I have had these before and have no adverse reactions in the past. The doses are higher so we will see how it goes. Nanette came to visit foe 3 hours today. She brought some family pictures for my room. She also got an egg crate mattress to make the bed a little softer. She helped me clean up and scrub off the betadine left over from the central line placement yesterday. I sent her home because the weather is terrible with a blizzard warning. She had a difficult time getting home.

Blood counts. Platelets=40 White blood cells=2.3 Red blood cells=28.2.


I walked for about 75 minutes again today. Not much going on during the afternoon so I caught up on my newspapers, e-mail, phone calls and started this blog. Watching basketball and some TV shows tonight. I am getting the same chemo again starting at 9PM tonight. I tried to get the nurse to start it earlier since it takes about two hours to run. She said no because they have to hit me when the cells are dividing. It will make a late bed time for the next 4 days.

It looks like we will finish at midnight. The nurse will finish the chemo and then take blood then give me my ambien. I just got an insulin shot. Still snowing pretty hard outside. It is supposed to stop by morning. Take care. Thanks for reading.

Day -7

Nanette & I arrived at the hospital at 6:30AM to check in to get the new catheter placed. It took 3 sticks to find a vein in my right hand. The first nurse had to call a second nurse to get the job done. I would have asked Mom to do it but it is not her specialty. The rest of the procedure was painless and I was up to my hospital room by 10:00AM. The catheter has 3 lines and I do not have to be poked through the skin each time like my old port.

Blood counts. Platelets=56 White blood cells=3.5 Red blood cells=33.

I got settled in my room and unpacked all my clothes and stuff we brought from home. Dr. Matous came in and examined and talked with us. He was happy that my lungs sound clear and the pneumonia is going away. The nurse took my history and asked many questions. It took about an hour. She started me on fluids about 300ML per hour which will continue throughout the entire chemotherapy. It makes me go to the bathroom quite often. I am trying to walk at least one hour each day. I did about 75 minutes today. I walk back and forth outside in the unit. The hall is not very long so I make many trips round and round. I have to wear gloves and a gown any time I leave the room. Once my white blood cells get too low I will have to wear a mask.

The chemo premeds are zofran for nausea and dexamethasone which is a steroid that works with zofran to reduce nausea. The chemo is called BCNU (carmustine) with is diluted with alcohol so I was slightly intoxicated last night. I was also slightly flushed. It gave me a headache like a hangover but it was gone by morning. They gave me tylenol for the headache. Sleep here is interupted by my blood being taken at midnight each night. I am not sure why it has to be done at midnight. I was given ambien to help me sleep. It helped but I would wake up every 2 hours with a full bladder. I slept until 7:30AM and as I was getting up Dr. Matous entered the room. That's it for day -7. Thanks for the calls and love. I will try to do this every day. Maybe Nanette can fill in on my fatigue days. Take care.