Monday, March 31, 2008

Transplant Day -2

Today unfortunately wasn't a great day for Doc. It started last night. He began to spike a temperature and started vomiting after I wrote the blog. Then this morning he started getting a chill and shaking again. Doc then started feeling weak so the nurse took his blood pressure. When the nurse was taking his blood pressure she did it four times because she thought it must be wrong. It was very low so they decided to move him to the ICU. In the transplant unit they have their own ICU so we just had to move down the hall. For those of you that know Doc well he brought everything again. The nurses were saying there are only two people in the room. Doc has brought a lot of stuff to work on including a printer. It is very hard to keep him down. With God's help and his drive he can do anything!! The doctors and nurses have kept a close eye on him today. Thankfully my prayers were answered and he is doing better this evening. They had to delay his last dose of the rabbit medicine, but they were able to get it in. Tonight they will give him his last dose of chemo and tomorrow he will get a chance to rest. Please continue to keep him in you prayers.


Sunday, March 30, 2008

Transplant Day -3

Today started out great for Doc. He slept pretty well last night and was feeling fine most of the day. He was able to eat breakfast and lunch. He spent a lot of time working on his strat-o-matic baseball game. He also got in a really good walk this afternoon. He couldn't walk this morning, because they had him hooked up to the monitors while they gave him some of his medicine. Today it only took four hours, but it does restrain his walking. This evening Doc started feeling like he was getting a chill. The tech came in and took his temperature, but he wasn't running a fever. That was great, but soon after he started feeling bad. We called the nurse to get something for nausea, but unfortunately she was too late. She did give him something after he was sick and that has put him to sleep. We can be thankful for the fact that he isn't running a temperature. I am praying that he has a better day tomorrow. Doc has just one more day of medicine and two more nights of chemo then on Tuesday he will get a break. Each day brings us closer to the transplant and him getting well enough to go home again.

We were thinking about everyone at church today. We hope everything is going well. We are praying that it will be God's will for us to be back there soon.

Everyone on the floor we are on in the cancer center is having/or has had a stem cell transplant. There are 16 rooms on this floor that are all private and always full. So they do a lot of transplants here. It has been interesting to talk to some of the other patients and their spouses. We have found out some of what they have gone through and how God is working in their lives.

We ask that you continue to keep Doc in your prayers. Hopefully he will be well enough to write the blog himself tomorrow.


Saturday, March 29, 2008

Transplant Day -4

Today has been a much better day! I was able to sleep last night and felt pretty good when I woke up despite the many IV interruptions during the night. I was able to eat today and had no vomiting. Thank you, Lord! I did get a new medicine today called thymoglobulin. It apparently comes from a rabbit. It is used to wipe out the T cells. They are the white blood cells that attack viruses, cancers, etc. This medicine is given over 6 hours and I have to be hooked to a cardiac monitor and blood pressure machine. It can cause a rise in the heart rate, a low blood pressure and can affect your oxygen. Some people have a bad reaction to it and so I was premedicated for it. Since it is from a rabbit, sometimes people get a bad allergic reaction called anaphylaxis. That is another good reason for the premedication. Fortunately, I tolerated it well. That was another blessing for today. They say that if you tolerate it well the first time, there are usually no problems after that. I get a dose that is 2.5 times higher tomorrow and Monday.

After being unhooked from the monitoring equipment at about 4:30 I was able to walk today. I got in a total of 12 laps. That wasn't too bad for a short day. My temperature was also better today. It dropped to normal for part of the day and never went over 100.

My hemoglobin is down around 7 today so I will be getting a transfusion tonight. My platelets and white count are still OK.

I felt a lot better today and was able to do some work on the computer, watch the NCAA basketball games and the Cubs game! I am excited that baseball season will soon be upon us. Teresa was relegated to the computer and the DVD player during the games. She slept a little better last night but nothing is as good as home. I hope I do well enough that she can go home at least once a week till we go home for good. She is planning on picking up our mail and papers the girls have sent home from the office. We also want her to spend a little time with Michael. I know this is hard on him, but he has been great about everything.

We did find out yesterday that in order to go home from the hospital the first week after discharge, you need to be within 60 miles or one hour from the hospital, not the two hours we were previously told. That was a disappointment but we will deal with that.

Michael started at McDonald's this week and had to close last night. He got home about 2:30 AM. He was pretty tired and slept in today.

I will miss going to church this week but I take comfort in the knowledge that my church family(as well as all of you) will be thinking of me and praying for me. Till tomorrow, I pray that God blesses you as He blesses me!


Friday, March 28, 2008

Transplant Day -5

Last night things continued to go in the wrong direction. As Doc said last night we didn't get into his room until late. By the time they did the paper work and started his IV's it was 11:00 pm. The medicine they are giving him takes 7 hours to run. Between the switching of bags and the pump going off because of air in the line we were constantly being woke up. Needless to say we didn't get a lot of sleep.

Today hasn't been a good day for Doc. We are not real sure what is going on yet, but last night shortly after they started him on the chemo and the other medicines they are giving him, he started feeling bad. Today that has continued. He has been vomiting off and on today. Then this afternoon he started running a fever of 102.0. Unfortunately he wasn't able to get in much of a walk today. I know that bothers him since he is so adamant about his patients walking a lot. He does try to practice what he preaches.

We are praying that he will feel better tomorrow. This is very unusual for us to have him start with the temperatures and vomiting this early into the chemo. He is on a study and it might be due to that medicine, but we are not sure. They took some blood cultures today so maybe we will have some more answers tomorrow. Please keep him in your prayers.


Thursday, March 27, 2008

Transplant Day -6

Well I finally made it to my room tonight! I guess I should explain the title of the blog before I do anything else. They number things here by the day of the transplant. It is considered day 0. Today is 6 days before the transplant so it is day -6.

Now my story of admission. They told me to come at noon and have lab work and then go to Xray at 1pm or whenever I was done at the lab. I got here at noon and had my lab work done and went to Xray at 10 minutes to 1pm ( I was actually early!). We waited for an hour and a half and Teresa had noticed a sign that said to check with the desk if we waited more than 45 minutes. When she checked, she found out that they had forgotten to put in the computer that I was here! Xray had been looking for me and had called my doctor to see if I had canceled! I finally got back to the rooms for the test and the radiologist wanted to know why they were taking out my old IV when it was still working! I told them it was not my decision, perhaps they should check with my doctor. After checking, they decided to go ahead. The procedure went well and I was done at about 3:40.

We then went over to admissions. I signed in at 3:50. They told us there were no open rooms and it would be a while. I was hungry as I had not eaten anything all day. We got something to eat at the cafeteria and went back to admissions. The TV was showing the movie "Remember the Titans". We got to see all of it and it started a second time when at 8PM they told us admitting was closing but they still had no room! We were sent to the family room on the floor where I was to be admitted until my room was ready. By this time it was 9PM and the cafeteria was closed and if I wanted something to eat I would have to get something out of their pantry. I wound up with a bowl of soup.

I should mention that my shingles were a lot better today. I could almost see normally out of my eye and the pain was less then yesterday. I missed two doses of my medication, though, while waiting to be admitted. I did not bring my medicines from home as I thought I would be admitted and would not need them! I hope I do not have a setback because of that.

As of this writing at 10:40 PM I still have not had any of my chemo, my antibiotics or my home meds. They will hopefully start soon. I do not expect to get much sleep as the chemo takes two hours to run in and the antibiotic takes four. I do not know if they have anything else I need to get IV but that will take me till sunrise. They say a hospital is not the place to get rest and at least for today, that will be correct! Hopefully we are getting all the bugs worked out early in my stay so that the rest will go smoother. I sure wish I could have done this at Passavant! I surely would not have waited so long and would not have been lost in Xray! There is nothing like a hometown hospital!!!

Hopefully I will have a better day tomorrow and will have more to say. They did tell me today that the stem cell infusion(or transplant) only takes about a half an hour or so to run in. It depends somewhat on how much they got from the donor and how thick it is.

The present information to reach me is posted again on the right side, under the picture of Ian and I.

I want to again thank you all for your prayers and comments and get well wishes. It is still humbling to me to realize how many people are pulling for me to get better. God has His plan and it will play out over the next several weeks. In the meantime, I pray that He blesses you as He blesses me!


Wednesday, March 26, 2008

Last Day at Home before Transplant

Today I got my bone marrow results back, so I decided to post again. It showed I am still in remission Praise the Lord!!! I am ready to go for the transplant! My shingles feel a little better this evening. I took some pain medicine last night and was able to sleep better. I also used some Benadryl. It wasn't my best night's sleep but it was sure better than the night before.

I realized last night that each time I went in for chemo before, I felt pretty good going in. I was eating well, my strength was improved and my stamina was pretty good. After coming home from the chemo I was weaker, lighter and not feeling quite as good. This time I am going in sore with the shingles, weaker than before and with not quite as good of an appetite as normal. So it fits that I should come out feeling better, stronger and with a good appetite (right!!)!

I had labs today and they showed my kidneys were better so I restarted the antibiotic again today. They will probably change antibiotics once I get in the hospital tomorrow.

I get labs drawn tomorrow when I first get there at about noon. After that, I report to x-ray and they will take out my current Hickman catheter(an IV) and replace it with a new one. This is to be sure there is no infection in this one since I have had it in since December 3rd! After that, I get admitted to the transplant unit. They start my five days of chemotherapy tomorrow. I am not sure what to expect. They say it might be easier than my previous chemo. However I also get medications to wipe out my immune system and they can cause side effects like nausea, vomiting, diarrhea and weakness. Hopefully, I won't have too much of that. I get the sixth day off, which is April 1st. Hopefully that is not just an April Fools' joke. Then if all is going well, I get the transplant on Wednesday, April 2nd. How long I stay in the hospital is dependent on whether I get any new infections and/or have any other problems. They expect I will have some transfusions during that time as needed. I will be ready to go home 2-3 weeks after the transplant if all goes well.

I will write some more on the blog tomorrow and will try to update it daily. My transplant and the recovery afterward are now in God's hands. It appears that He thinks now is the time. I will do what I can do and God will do the rest. I appreciate your prayers and would like to have them this week for the chemo and next week for the transplant. I know that they help and make a big difference. In the meantime, I hope God blesses you as He blesses me!


Tuesday, March 25, 2008

Latest Transplant News

Here is the latest on my transplant. I have not yet heard back about my bone marrow biopsy. Everything else has come back OK so far. My kidney tests are a little worse so the infectious disease doctor told me to stop the antibiotic for now. They will probably start a different one in the hospital. For now, they want me to plan on being admitted on Thursday this week. If all goes well, I will have my transplant April 2nd. My donor was supposed to donate the stem cells today and they would freeze them until I am ready for them.

I also hit another speed bump on the road to the transplant this weekend. I developed a rash on the right side of my head and got swelling around my right eye Saturday morning. I have trouble with eye swelling and rashes sometimes from my cat so I originally thought this was from him. It began to hurt by Sunday. I went to my eye doctor on Monday because it was getting worse and he told me that I have shingles! He put me on an antiviral and talked to my transplant doctor. She said it is not uncommon for this to happen. It may be caused from stress or my immune system being down a bit. It should not interfere with the transplant. It has made it harder to sleep, though.

I did get to spend Easter Sunday at church. We had a good service. My grandson, Ian, got to participate in an Easter egg hunt after church and had a good time as well. Teresa made a turkey and we had a big lunch. Daniel was able to come home from SIU Edwardsville for the weekend. It was nice to see him again. We played some games and had a good time.

Michael got a job at McDonald's and started today. This will help keep him busy while I am in the hospital. School, McDonald's and his job cleaning the office should occupy a lot of his time. He is also involved in the youth group at church and the Fellowship of Christian Athletes. With all of that I think it will be hard for him to get into any kind of trouble. We have friends who will spend the night here during the week and he may stay with Kim and her husband on the weekends when Teresa does not come home from St. Louis. He is a good kid so I expect he will be fine. I just hate putting him under this kind of stress at his age.

I will probably not add anything to the blog until I am admitted on Thursday. I hope to have an address, room number and phone number by then.

As I mentioned, we had a great service on Easter. God let me spend time with my family and it looks like he is ready for me to be admitted for the transplant this week. Even with my shingles, I know there are plenty out there worse off than me and that God will be there to get me through this as well. I hope he blesses you as He blesses me. I do ask that you continue to keep me in your prayers as I journey into the next step on my vacation.


Thursday, March 20, 2008

More Transplant News

Today I had my repeat bone marrow biopsy. The results will be out next week. I also had a MUGA scan. The results should be out in a day or so. I will have the repeat brain MRI tomorrow. I will also be having several other tests. Assuming they are all OK, I will be admitted for the transplant on Thursday.

I told you I would let you know more about the transplant so here it is. I will get five days of therapy after admission to wipe out my bone marrow and to treat any cancer cells that are left. The stem cell transplant should be on April 2nd. The stem cells are given through my veins like a transfusion. I am not sure how long it takes but I believe it is only a couple of hours or so. When I am admitted, they will be taking out my current Hickman catheter and replacing it with another catheter of some kind. They are taking the line out because it has been in place since early December and they want to make sure there is no infection in the line.

They expect that I will be in the hospital for about 2 or 3 weeks after the transplant. My counts should return to normal 12-15 days after the transplant. During that time, they will also be giving me anti-rejection medications. I have to be on them for quite a while. I will be discharged as soon as my counts get high enough. That, is provided I don't run a high temperature again. The transplant team wants their patients to stay in the area for a week after discharge if they live more then two hours from St. Louis. They want me to stay because we are about two hours away. I am hoping to convince them to change their mind so that I can come home sooner.

When I first go home, I will have to stay away from things that can cause me an infection. I will have to avoid crowds. I will not be allowed to have my pets stay too near me and certainly they cannot sleep in my bedroom. I cannot do any digging in the yard or be around any remodeling or home repair. They both have a high chance of having some kind of mold or fungus that I would be susceptible to catch. It usually takes about 100 days after the transplant to be able to reduce the anti-rejection medications to a point where I can return to work. I am hoping to be back to work in July or August.

I am looking forward to Easter services this weekend. If any of you do not have a church home, my wife and I would like to invite you to our church. Westfair Baptist Church is located on Lafayette between the fairgrounds and EMI. Sunday morning services start at 10 AM. We would love to see you there. In the meantime we hope that God blesses you as well as He blesses me.


Wednesday, March 19, 2008

Transplant Date Set

I saw my transplant doctor in St. Louis today. She has been conferring with my infectious disease doctor from St. Louis. After reviewing all the current information, they have decided to admit me on Thursday, March 27th. I will get "conditioning chemotherapy" for 5 days. They will give me some meds to wipe out my current bone marrow and some mild chemotherapy to knock out any remaining leukemia cells. Then I get one day off and then I get the stem cell transplant. If all things go as planned, that will be Wednesday, April 2nd. I still have some tests to do first but at least we have a date now.

I will be having a bone marrow biopsy tomorrow morning. This is to be sure I am still in remission. In the afternoon, I have a MUGA scan. This is a test to be sure my heart still has normal function and I can tolerate the stress of the procedure. Friday I will be having another MRI of the brain to be sure my abscess is improved on the antibiotics I have been taking. I will be getting a chest Xray, some more bloodwork and an EKG to be sure things are still OK. I also will get some pulmonary function tests to be sure my lungs are still OK for this procedure. If these all come out OK, we go ahead with the transplant. They will let me know early next week if everything is still a go.

We also found out today that my donor has had some scheduling difficulties since they moved the transplant back. He is still going to donate, but will be doing so on March 25th. The stem cells will then be frozen and thawed out when I am ready for them. The transplant donation centers frown on this because they do not want the donors going through all this and then the stem cells do not get used for one reason or another. They have agreed to let us donate early this time and freeze the cells, This is not quite as good as getting them fresh but still should be OK. Some people have blood diseases requiring a stem cell transplant where they donate to themselves. In those cases the cells are frozen till the patient is ready to get them. That still works well. Some of the donor cells die during the freezing and thawing but my doctor said that since I have a young healthy donor, there should still be plenty of cells. They have to put a preservative in with the cells and sometimes transplant recipients can have a reaction to that. Usually it is not much but can cause hives, fever, chills, nausea and even shortness of breath. These are all treatable. The preservative is excreted by the lungs and can cause a funny taste in the mouth and the chemicals that are breathed out can actually leave an odor to the room for a couple of days till it is all gone. All in all they say I am better off with frozen cells from a young male donor and a ten point match than to look for a different donor who might not be as young or as good a match.

This means I will be able to be home for Easter and attend services at church on Sunday this week. We had our family Easter dinner last Sunday when Daniel and David were home because they were not sure if they would be back for Easter. They were home for spring break(Even though it wasn't spring yet). We had our good friends, Gene and Marilyn Retzer over too. Daniel will probably be coming home this weekend but David will not be able to come. I will also be able to be home for most of Michael's Easter vacation. He is off Good Friday and all of next week. The delay has let me spend more time with the kids. I am glad God thought of that when he modified the schedule the doctors orginally had planned for me.

My family and I appreciate all the prayers that have been said already for us. We covet your prayers for the coming days and weeks. We also ask that God will have His will in the tests and getting the transplant done and we pray that it will be successful. We also want to thank you again for all the continued cards, it really hummbles us to see how much people really care. In the meantime, we pray that God blesses you as he blesses us!


Wednesday, March 12, 2008

Latest Transplant News

I heard from Dr. Cashen's office today. They told me that my transplant will be delayed until April. I am not sure why it was pushed back two weeks instead of one from the extra days of antibiotics. I have an appointment next Wednesday(March 19) to see Dr. Cashen. They have asked the donor to change collection dates to either April 2, 3 or 7. My transplant would then be that date or the day after. If the collection date is April 2nd, my admission date would be March 27th. The good news is that I will be home for all of David and Daniel's break this week. I will also be home for Easter. I will be home for at least part of Michael's spring break. I am disappointed that I will have to wait but I am glad to have the extra time with my family. I am also comfortable with taking the antibiotics for a while longer to get the infections under better control before the transplant. There are a few tests I will have to do before the transplant. I need to repeat my Chest Xray, my heart scan(Called a MUGA scan), my pulmonary function tests(breathing tests), and an EKG. I may have to have a repeat bone marrow biopsy as well. I will find that out about all of them by next week.

I have enjoyed the time with my sons this week. All of our vehicles have needed to get their oil changed or more and we have gotten that done as well. We fell a little behind when I spent so much time in the hospital and Teresa was with me so all of the vehicles now needed at least an oil change.

This means I will be able to attend church for Palm Sunday and Easter Sunday. One potential problem is that David's graduation from law school is May 10th. If I do not get my transplant till the first week of April then I may still be in the hospital for his graduation. Even if I get out in time, I may not be able to be near crowds because of my anti-rejection drugs. I guess God is working everything out in His plan so I just need to wait and see what happens.

May God bless you as He blesses me.


Tuesday, March 11, 2008

Latest news on transplant

I do not have final information but I thought I would let all of you know, what I know as of today. I had my MRI last week and it was slightly improved. Dr. Dubberke, my infectious disease doctor in St. Louis, has seen the report but has not seen the disks yet. He let me know today that he wants my to take the antibiotic I am on for a total of at least 6 weeks before I undergo the transplant. That takes me out to March 21. He will talk to Dr. Cashen, my transplant doctor, and she will call me and let me know when I will have the transplant. I will let you know when I know more.

Two of my sons are home for spring break this week. If my transplant is delayed I will get to spend more time with my them before they leave on Sunday. Isn't it great how God works things out!

My lab work has been stable. I still run a low potassium and magnesium despite taking supplements. That is from my antibiotic. I guess I will be taking the supplements for a while longer.

I still am feeling well but I get tired at the end of the day. I guess part of that is the low potassium and magnesium and some is from the antibiotic. I am sure some of it is also from the infection. Hopefully, that will all improve after I get over the infection and get off the antibiotics.

I was saddened this weekend when I heard that Dr. Drennan had died at home. He was one of the other surgeons here in town. He was instrumental in getting the paramedic program started here at Passavant hospital. He also flew a plane. A couple of years ago, we went to a meeting in Nashville and he flew us there and back in his plane. He also helped cover my patients when I would go out of town. He told a lot of stories about his time in the Navy. I enjoyed working with him. He was a friend of mine and I will miss him.

I hope to find out more about the timing of my transplant in the next day or two. When I know more, I will post the information. My family and I continue to appreciate your prayers for us. May God continue to bless us all!


Wednesday, March 5, 2008

Chemo Round 3 Day 52

I thought I would write some today so you know what is going on. As you know, Jon was home last week for his birthday. He left Saturday morning. We had a good visit but like always, it was much too short. We will miss him till we see him again, probably in May when his brother and girlfriend graduate. After he left, my mom came to visit! One of her nephews was kind enough to pick her up at home and drive her to the train station in Joliet. We then picked her up early Saturday afternoon in Springfield. We stopped for lunch and then visited till she left Monday night. Kim and Jeremy and Ian came over to visit with her, too. We went to church at Westfair Sunday morning and I enjoyed that also. We took her back to the train Monday night. Her train was late so we got to visit for a while longer. Her nephew met her again at the train station to drive her home. We really enjoyed the time we got to spend together and will miss her very much. We know she wants to be here more, but we also know how hard it is on her with her arthritis. She wouldn't be able to make it sitting at the hospital all day. We have asked her not too come when I am in the hospital. We would be so worried about her. We are not sure when we will get to see her again. It may not be till graduation.

I had my labs drawn on the weekend and again Tuesday. My labs are doing fine. I am having to take 6 potassium pills and 2 magnesium pills every day because of my antibiotics. I will get my MRI of the brain on Friday and hopefully it will be improved. After my infectious disease doctor reviews the scan, they will decide if I am enough better to go ahead with the transplant. The tentative dates for my admission are March 12th or March 14th if the MRI looks good. If I go into the hospital, they will be giving me some mild chemotherapy and some other medicines to knock out my immune system. That will be for 5 days. They give me the day off on the 6th day and I get the transplant on the 7th day. That would be March 19th or March 21 as things stand now. Fortunately, my donor is able to change dates with me.

I will let you know a little bit more about the transplant. In the past, a bone marrow transplant involved drilling into the pelvis and taking 300 or more cores of bone marrow from the donor. This was done in surgery. The cores were then placed in surgery into holes drilled in the recipient's pelvis. Nowadays it is actually just a stem cell transplant. The donor is given some medications ahead of time to stimulate his bone marrow. Blood is drawn from him and then spun down to get the stem cells concentrated. The donor cells have to be given the same day. Depending on where the donor is from, the stem cells are driven or flown to Barnes for the infusion. They are then given to the recipient (in this case, me!) just like a blood transfusion over several hours. It is much easier than the old actual bone marrow transplant. Over the next week or two, the stem cells find their way to the bone marrow and begin to grow. They take over the marrow. During this time, I will be getting anti-rejection medications so that the stem cells can grow and not cause any problems by attacking me or by me trying to attack the stem cells. I should be in the hospital about three weeks after the transplant if all goes well. I then have to stay in the area for a week and get checked again. After that, I visit them as an outpatient once a week for a month. They then try to wean me down from the anti-rejection medications. They think that after three months or so, I may be able to return to work if all goes well. They want me to start back slow with no call for a month or more. They would like me to just see patients at the office for the first couple of weeks. I told them about my practice and they suggested I just do scopes(colonoscopies or gastroscopies) when I return to the operating room for the first two or three weeks. If all is going well at that time, I return to work full time and resume taking call.

Daniel will be coming home for spring break on Friday, March 7th and David will be coming home on March 8th. They will be home till they go back to school March 17th. Hopefully, we will get to spend some time together before I go into the hospital.

I will have more information after the MRI has been done and interpreted. That may not be till Monday or Tuesday next week. I have to send the actual pictures to my infectious disease doctor and he will review them and decide if I am improved enough to proceed with the transplant. As soon as I hear something I will be sure to post it here on the blog.

In the meantime, I plan to spend time with my family and get ready for the baseball season and spend Sundays at church. I hope the Lord blesses you as much as He has blessed me.