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.