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.