Over the bout with hives and going great again, until, yes there seems to always be a catch. Had a busy weekend and did not feel 100% but thought it was just that I had been on the go. Sunday night and early Monday morning I knew it was something else. I began to feel dreadful and was unable to sleep, had extreme cramps and burning on eliminating. Knowing if I went to the emergency room at my local hospital, I would be sent onto a hospital in Fort Worth. Our local hospital is not equipped to handle dialysis patients because they have no dialysis machine or anyone who can do the procedure. I was to be a dialysis at 5:45 AM so decided to wait until I could get there and have them handle it. Dr. Shorie was to be there about the time I was to come off the machine so we waited to see what he said. I needed the dialysis anyway and it was best to keep on schedule. I pretty well knew what it was and he validated my thoughts. I had an infection and he prescribed an antibiotic (Levaquin 250 mg).

It is pretty powerful because it started to work within hours. Monday afternoon I was unable to stand or walk without becoming very dizzy, lightheaded and sick at my stomach. By Tuesday morning, I was feeling much better….human again. He told me to be careful and get a lot of rest for this week. Now this is hard to do at this time of year and there are many places I would rather be than resting. But I am because I want to be stronger for the holidays.

Not much has changed; I am still on dialysis and receiving blood and platelets. I was able to go for about 2 ½ weeks before receiving transfusions but when I was tested on Monday, they were back down to a dangerous level. The platelets were 11,000 and the hemoglobin was 8.1. I have had no difficulty receiving the transfusions since the time at M. D. Anderson when they tried to give me the blood too quickly and put me into fluid overload…. until Monday. At the end of receiving the two units of blood, I began to have a severe reaction. My throat started swelling to the point I could barely talk to tell them I was having a problem, I was itching all over and was having difficulty breathing. I must have been quite a sight because I was broken out in hives and when someone came into the room, their eyes certainly got bigger. They ordered blood and urine testing-STAT- but that all proved to be o.k. They contacted my doctor and were told to stop before giving me the platelets and give me steroids (Decadron). They were wonderful and someone stayed with me constantly for the duration of my difficult time. Eventually I was able to talk, the itching subsided and the hives went away other than on the inside of my throat. It has taken a couple of days for my throat to clear up. They do not know what caused the problem so I just look at it as another bump in the road.

The stem cells still have not started working and I must say I am very discouraged. No one seems to know the answer or what to do to get them going. My nephrologist at the dialysis center has upped the Epogen I am receiving each dialysis session to 45,000 so I am receiving 135,000 each week. This may be the max but he wanted to try this to see if it would help jump-start the stem cells.

When I was in to have my blood tested, my oncologist (Dr. Ray Page) wanted to see me and we visited about my situation. He is at a loss as what to do, just like all the doctors. One thing he told me that is a little disturbing is that over an extended period of time of receiving transfusions your body begins to build a resistance to them. It is like receiving many things for too long, you build an immunity to it. Then each time I receive the blood and platelets, there will be less and less reaction for my system. But there is no other answer so I will continue to receive them.

My fingernails have finally gotten back to normal. When I returned from Houston, they were long and lovely but as they continued to grow there was a “ridge” and this was caused from the trauma I had been through. They now look normal but it has taken this long for the “ridge” to grow out and be cut off. This is normal for anyone who experiences major trauma but they will get back to normal over a period of time. A minor thing but kind of interesting.

Everything has been pretty much status quo – dialysis MWF and still getting transfusions of packed red blood cells and platelets. I tried to stretch it to long this last time and really got into a weakened state. My platelets were 11,000 and they have been that low and lower before but my hemoglobin was 6.6 and I think that is as low as I remember it being. I knew it was low because of how my heart was pounding and laboring, my head felt like it was splitting and I felt so very weak. I received the blood and platelets and they have helped how I feel.

We went to another vascular surgeon today, Dr. Hudgens in Fort Worth. We were impressed with him and felt he gave us straight talk and answered our questions. He had received the vein mapping that was done at Baylor/All Saints and after he studied those, felt my veins are so small it will be difficult to install a fistula close to my wrist area and a graft would have to be installed further up my arm. He told me I could not use it for about three weeks and would have to use the catheter. I knew this so it was not a surprise. He told me that catheters, grafts and fistulas all can become infected and just because I changed did not mean the risk of infection would be lessened. He said in a normal situation, the installation would be a day surgery but mine would be more involved. I told him that nothing was ever normal or easy with me. With my platelets and hemoglobin being so low, I would have to go in the day before and be “juiced-up” on platelets and blood then he would keep me at least a day after to keep an eye on my situation.

He said as long as my stem cells stay in the infant stage and do not manufacture platelets and blood, I would have difficulty with the graft. The graft would be a plastic tube inserted and wrapped around inside my arm with a plastic “cap” at the surface that serves as the access point for the needles during dialysis. After dialysis is over and the needles are removed, the bleeding must be stopped with pressure applied to that area. It could be very dangerous for me and I would be taking a chance on uncontrolled bleeding. The catheter I presently have has cut-offs and caps that do not allow bleeding. As long as the catheter is kept clean and continues to work, it may be the best answer for me. I do not allow blood draws through the catheter and only have direct sticks for blood testing and crosschecking. It can only take place in my left arm since I am left-handed my right arm must be kept as scar proof as possible because if I do have anything installed in my arm, it will have to be in the right arm.

I asked him if he could install another catheter if the present one failed and he said “yes.” There is always a risk that scar tissue would make it difficult but it certainly is in the realm of possibility.

I have chosen to wait on the installation for a while because of the possible downside of going on with the surgery. He said he has patients who have used the same catheter for as long as three or four years. I was dreading the surgery and I know the other dialysis patients are very restricted during dialysis because the arm must be taped down and they are unable to move around as much as I do. I cannot get up and move around but I sure do wiggle around in the recliner during the three hours. I read, listen to music through my headphones, work crossword puzzles, sleep, etc during that period of time. The techs and nurses tease me that sometimes my alarm goes off because I am also doing my exercises during that time.

Thanks for your interest. It is really discouraging that the stem cells have not started working because it has been eight months. I am going to contact Dr. Anderlini, the head of my transplant team at M. D. Anderson, and ask him if he has any ideas of where we go from here.

Plans changed, not unusual, I received a letter on Saturday that Dr. Stroman was no longer accepting Blue Cross/Blue Shield Insurance so I called on Monday morning to see if this included Blue Cross/Blue Shield Health Select and was told it did but I could still see Dr. Stroman but it would be out-of-network. I said no way and cancelled the appointment. It made me a bit unhappy with his office because I had only made the appointment on Thursday and received the letter on Saturday. I should have been informed at that time and I would not have made the appointment and would have started looking for another surgeon. I told the dialysis center and they are going to find another doctor to install the fistula. It is just disgusting because I have wasted more time with this latest situation. Oh well, it will take place when it takes place.

This week has been a good one and I enjoy those because the last two or three weeks have not been so great. Take care and I hope to move forward with the fistula installation soon.

My stem cells have not started working so I am still receiving packed red blood cells and platelets each week. Last week I was given platelets because mine were only 9,000 but my hemoglobin was borderline so they did not order a blood transfusion. I did not feel well and felt the blood would help but they wanted to let it ride for a week. I began feeling weaker and knew my heart was laboring and this is a sign that my hemoglobin is becoming dangerously low and it was (7.6). As usual after I am “juiced-up” on blood, I feel quite good. I always work and prowl around the house most of the nights when I feel good and this is to make up for the time when I feel so rotten and have to rest most of the time. I can really get a lot done but stay away from where Arthur and T. R. (our 13-year old dachshund) are sleeping.

I have an appointment next Monday (October 3rd) with Dr. Stroman who will be installing my fistula. My doctors are becoming more concerned with the presence of my catheter and the fact that its end tubing is located so very close to my heart. It is straining an already weakened heart. The vein mapping has already been done and Dr. Stroman had wanted to wait until my platelet count improved but that is not happening so we need to proceed with the installation of the fistula. They will probably put me in the hospital the day before and give me platelets, then do the surgery, then keep me until they are sure there is no bleeding from the procedure.

Dialysis again this morning…same old same old.

Sorry I have not written sooner but not a great deal has changed. I am still going to dialysis three times a week and getting blood and platelets regularly. The stem cells still have not started to work and that is disappointing. If they would start working, I would get at least a day and one-half of each week in my life back and not have to go to the hospital for the transfusions.

We went to Dallas to see Dr. Fenves, my nephrologist, August 30th for a regular visit. I asked him if I would ever be a candidate for a kidney transplant because of my cancer, amyloidosis and heart murmur. He said that I could but first the stem cells would have to start working and I would have to make my own red cells and platelets and be free of transfusions.

I hate to think of another major medical ordeal but I am afraid that is the only way I will ever get off dialysis. The desire to get off dialysis was heightened this last Saturday when we attended the Amyloidosis Support Group of Texas meeting in Dallas. I am coordinator for the group and work with another member, Maurice, who arranged for a wonderful program on that day. It was about living donor kidney transplants. Dr. Levy with Baylor All Saints in Fort Worth was the speaker and he also covered the problems of being of dialysis for a long period of time. The prognosis for a long life on dialysis is not very good. It is so hard on the entire system

that it just “wears out” faster. A kidney transplant also has its downside because it can lead to other problems. So, I feel I do not have a great choice.

When we went to the surgeon who will put the fistula in my arm for dialysis, the first thing he said was that my platelets would have to start working and increase in numbers before he would think about doing the surgery. I found that even if I do have a kidney transplant, I would still need the fistula. The fistula is to replace the “temporary/permanent” catheter I now have for dialysis. Dr. Fenves is concerned about the present catheter and how long it has been in place. He wants the fistula installed soon and wants to have it done at Baylor Medical Center in Dallas, if there are further problems.

Things are moving rather slowly and it is hard to deal with at times. Thanks for your interest, your prayers and best wishes.

I was released from Baylor/All Saints the afternoon of Thursday the 11th and it is good to be home. They would not let me leave until I was fever-free for 24 hours. I must admit I was beginning to think of escape routes if they had not released me because I was very tired of the hospital. The nurses and staff were wonderful but six days is a long time and I had other things I wanted to do. I feel great and dialysis went well this morning.

As A.G. said, the biopsy showed I do not have leukemia and we are thankful for that because one form of cancer is enough to deal with at a time. Add the amyloidosis on top of it all and my plate is pretty full. It did show that the stem cells are there but just taking longer to get to work. It showed I had chemo and have had a great deal of trauma to contend with. Nothing we did not already know other than the absence of leukemia and that is a good thing.

With regard to La Donna’s 7/28/05 posting where she stated she would have results of her biopsy, we do actually have some good news. She doesn’t have Leukemia. I know with everything else going on with her, this might seem to be a footnote, but we take small victories where we can.

La Donna is currently at Baylor/All Saint’s in Fort Worth. Her temperature went up to 103.5° Friday night. As it turns out she had a severe kidney infection.

On Monday after dialysis she had a strange feeling when she would go to the bathroom, she got to feeling better and dialysis went well on Wednesday. Thursday morning was a good morning; she decided to work in the yard. About noon both kidneys felt like they had been kicked with a steel-toed boot. She spent the next several hours on the sofa resting.

Friday was dialysis again. When she got there her temperature was about 100.7°. During dialysis they constantly monitor your blood pressure, it was fine. When dialysis is complete, they take another sitting blood pressure and a standing blood pressure. During the standing blood pressure, she became extremely light headed and there was a swishing noise in her ears. They immediately sat her down and put her in a reclining position, because her blood pressure at that time was 70 over 30. Dialysis centers will not allow you to leave if you are driving yourself until your blood pressure registers at least 100, if someone else is driving you it has to register 90 or above.

The rest of the day she became progressively weaker and her condition worsened. About 8:00 PM she knew there were real problems, when Arthur checked her temperature it was 103. Arthur called the dialysis center and they told him to get her to the hospital. When she got to the Emergency Room at Campbell, her temperature was 103.5°. She had bacteria in her kidneys and she had an extreme kidney infection. She was given 3 antibiotics in the ER and sent by ambulance to Baylor/All Saint’s in Fort Worth, arriving at about 11:30 PM.

She was administered another antibiotic and because her hemoglobin was so low, she received two units of blood. Her temperature ranged between 100.5° and 103.1°. They could not get it below 100. About noon Saturday she began feeling better and has progressively improved. Sunday her platelets were down, she received platelets and they did an abdominal CAT scan. She will be in the hospital tomorrow and will have dialysis and two more units of blood.

I apologize for not entering to the blog for so very long. I am still waiting for the stem cells to start working. I am still receiving platelets each week and blood about every other week. I had the bone marrow biopsy done Tuesday, July 19th and am waiting for the results. One of the tests they do takes a pretty long time for the results to be sent back. Dr. Anderlini and Dr. Page felt this was the best way to find what is going on with my stem cells, the lazy rascals.

My platelets and hemoglobin were both down and I received ten units of platelets and one unit of blood on Monday before the procedure. This helped insure that the bleeding would be controllable and I would not have to experience the same thing I did with the last one in Houston. One thing I was thankful for was I was able to have it done at my local hospital (Campbell Memorial). Dr. Anderlini in Houston, the head of my transplant team, and Dr. Page, my local oncologist, are friends and went through training at M. D. Anderson together. They are very good about discussing my situation and work together with my best interest in mind. Dr. Anderlini said it would be o.k. for me to have it done here since Dr. Page would make the arrangements and would see that everything he wanted was done. Dr. David Brigati did the procedure and all went well. They kept me in recovery for an hour to make sure I would be able to go home without any complications.

Of course, I could not take a bath or remove the bandage for 48 hours. The bandage was a pressure one and was really quite large. I felt like I was wearing a huge wad of material and tape and was sure glad when the 48 hours was up and I could get rid of it. Actually I cheated and removed it and bathed after 46 hours but who’s counting?

I go tomorrow for blood tests and will see how the numbers are doing. I will be glad when the results are back from the biopsy and hopefully they will direct the doctors to what is needed to get the stem cells working. It would be such a relief not having to go in each week and spend a day at the hospital receiving the transfusions. It does get to be trying going to dialysis three days a week and at the doctors and hospital for one or two.

The dialysis is going well and I am now down to three hours on the machine on Monday, Wednesday and Friday. I have asked for two days on the machine each week but they have said that is not a possibility but at least I am down from four hours to three. That is probably as low as they will go with the time. I am home by about 9:20 AM and I told them that is earlier than some people get up. It does give me the rest of the day. I still have to rest after I get home because I am pretty well drained of strength but my recovery time is getting better and that is good.

I will post when I have the results of the biopsy. Thank you for your interest and concern. I have received so many inquiries about what is going on since I have not posted for so long.

It has been awhile since I have made an entry but not much has changed. The stem cells still are not working and I have to get platelets and blood each week. By the end of the week, the platelet numbers are between 11,000 and 13,000 and my hemoglobin numbers are between 6.7 and 8.0. While I was in the hospital today receiving platelets and blood, another person was there getting platelets and was saying her platelets were low at 45,000. I must say when mine reach 45,000 and stay, I will do a victory dance….I know they need to be higher but 45,000 would be a great start. My local oncologist and the nephrologist at the dialysis center both wanted to know when I would be going back to Houston to see Dr. Anderlini and I told them his office had called wanting to know how I am doing. I called back today and knew what they would say, come back to Houston. I am waiting for them to give me the appointment time. I told them I had been ”hiding” from them. They want to do another bone marrow biopsy and I am not sure what else. Not sure what they can do to jump start the stem cells but guess I will find out. Most of what they do for me is experimental anyway.

Last Wednesday I had my counts taken and my platelets showed to be 32,000 per microliter and that was encouraging but they wanted to take the counts again on Friday. In less than 48 hours, my numbers had dropped to 12,000 per microliter. I was told to go to the hospital and they would have them ready for me at 8:00 on Saturday morning. I said I had a meeting in Dallas on Saturday and requested they be given on Monday. They said that would not be possible because the risk was too great to wait over the weekend. Back to the hospital on Saturday morning for 10 units of platelets. The normal life of platelets is about five to seven days and this decreases when I am not making my own platelets and receiving them from someone else to about three to five days. Again, thanks to those dear souls who gave the platelets.

Went to dialysis today, as usual, the rest of the day has been one of resting and knowing that tomorrow will be better. It is hot here and that takes a toll on me but as long as I stay out of the sun, I do o.k.

Not a great deal has changed I am still on dialysis MWF and receiving ten units of platelets each week and two units of blood every other week because my stem cells still have not started working. I asked my local oncologist, Dr. Ray Page, what would happen if the stem cells do not become active. He said they would but we do not know the timeline they will choose. The doctors all tell me that about four months from the time you receive your stem cells is an average for them to become active. They say with me having several problems that mine could easily take longer such as six to eight months. The four-month period since I received my stem cells is up on the 22nd of June. I asked him what happens until they do start working and he said we would continue doing what we are doing now and that is for me to continue receiving platelets and blood. Not a wonderful thought but one I can live with as long as needed.

I have become more and more appreciative of people who will take the time to donate blood and platelets. They have certainly saved many lives and I am able to continue living somewhat of a normal life because of their generosity. Blood takes less time to give and has a longer shelf life than platelets. Donating platelets takes about 90 minutes and they have a shelf life of about five days. Platelets can be given more often than blood because they are taken from the blood. You are connected to a machine that receives the blood and removes the platelets and the remainder of the blood is returned to you. People with low platelet counts should be very careful because they must always be aware that their clotting ability is very restricted. When we cut or injure ourselves in someway, we can bleed quite freely.

I am gaining strength and am able to work in my beloved gardens. I gathered a beautiful arrangement of hydrangeas today for us to enjoy. Nothing can compare to being in the garden and listening to the birds, seeing the squirrels romp and play and watching the butterflies flit from flower to flower. I must work when it is early in the morning and quit when it becomes too hot because of the sun. I take blood pressure medication and when the sun hits my skin, it feels like little pin pricks all over. My yards are very shady and this helps when I am outside.

After dialysis last Friday, I saw my family doctor to ask some questions about some problems I had been having. The problems all seem to stem from my low platelet count. I did not realize how the low count could affect so many parts of your body. The itching on my back, the “bumps” on my legs and arms that are filled with blood and appear for a few days then flatten and leave bruises and the blood in my stool. He ordered a blood specimen to see what my numbers were and sure enough, the platelets were 11,000. He ordered 10 units of platelets for transfusion on Saturday morning.

The body is an amazing machine and if it has defective parts, it certainly can derail the entire machine.

Today after dialysis, the doctor at the Center met with me and reviewed my case. I asked him if he thought I would go of dialysis in the future. He said he would not say “never” but the possibility of going off dialysis completely was very slim. He said the kidneys are filled with filters and when they are damaged or destroyed, they do not repair themselves and lose various amounts of their effectiveness. Since I also have Amyloidosis damaging my kidneys, I need the dialysis to remove the toxins that I am unable to remove myself. He did say some patients have shorter times on the machine or have dialysis two days a week instead of three. They have shortened my time from four hours to three and one-half. I know that may not sound like much but when you have been sitting there for that long, even a half hour less on the machine is a good thing.

Sorry it has been so long since I have posted. The transfusions went well last week. I was in the day surgery area of the hospital for seven hours. The transfusions took six hours and you are required to stay an extra hour so they can check you and make sure you are doing well. I appreciate this because there have been times when I needed this period to make sure all has gone well.

On Monday the 16th, we went to see Dr. Stroman, the doctor who will install the AVF Arteriovenous Fistula or AVG Arteriovenous Graft. He said he does a different method that uses my veins and arteries and does not involve any plastic tubing. He said it cuts down on infections and lasts longer with fewer problems. He will order a sonogram of my arm and will determine the best area for the placement. When we told him about my platelet numbers, he said he would not do the surgery until those numbers come up. He said it is not an emergency and we have time to wait until my numbers are better. If things change, he will order units of platelets one day and do the surgery the next day.

June 22nd will mark four months since I received my stem cells back and this is the normal period of time it takes for them to become active. It will be wonderful if mine mature and take on their task by that time.

I am continuing with dialysis on Monday, Wednesday and Friday each week. I still hope that as things get better, I can come off dialysis in the future. There are some great people who go to the dialysis center and they have accepted me into their “family” with open arms. A common problem makes for good friends.

Well the elation on the possibility that my stem cells were finally working did not last long. My local oncologist wanted to have blood drawn on Monday to see how they were holding up. The platelets have dropped to 9,000 from 23,000 last Wednesday and the hemoglobin has dropped to 7.6 from 8.5. He has ordered 2 units of blood and 10 units of platelets to be given later today. We went for pre check-in and banding yesterday and will be at the hospital at 7:00 this morning for the transfusions. It will take most of the day and I should be out by 2 or 3, if all goes well. Our local hospital has to order the units from Carter Blood Bank but it does not take long for this, just overnight.

We went to Dr. Ray Page, my local oncologist, yesterday to get the weekly blood testing started and to update him on what had happened while we were in Houston. M. D. Anderson sends him information and we supplied him with our personal information. It was a good visit but the best thing was he was encouraged with my numbers. The testing for Thursday showed that my platelets were at 23,000. I have not had platelets for a week and before they would dip to about 13, 000 in a week. My hemoglobin was 8.5 and it has been two weeks since I have had blood so it seems to be holding. I go back on Monday to have it checked again, these numbers will serve as a baseline for the future.

Arthur and I have gotten to thinking that if anything can go wrong it will with us. I said I had to have another bone marrow biopsy before we left Houston. We did and I always have it done under sedation because it is very painful. The first one I had was not under sedation so I learned not to do that again. All went well, we thought, but when we arrived at the Aphersis Clinic for an infusion for pneumonia the nurse noticed that I was bleeding. Sure enough my platelets were so low that my blood was not clotting. She was not happy that I had not been checked more closely before they sent me from the unit where I had the biopsy done. She cleaned it up and put a great deal of gauze on the area and told me to sit so I could apply pressure on it. The biopsy is taken in the hip area about the level of the tailbone. It bled through again and then a tech was sent to get it stopped. He cleaned up the area and applied pressure on it for about 10 minutes. He said applying pressure on a wound like this is very important. Arthur acted as his assistant and opened the materials he needed. I had lost so much blood that I was given a unit of platelets and a platelet binder. Then finally I received the infusion for prevention of pneumonia. With all of this, we were in the hospital for another full day and we thought we would be back in the apartment by noon.

Had the day off today and that was nice. I still have the energy of a slug so did very little today.

I had dialysis yesterday and all went well. It really drains me for the rest of the day and I am unable to do much of anything but rest. My weight loss stands at 30 pounds and my appetite is nonexistent. I cannot think of anything that I want to eat but Arthur is so good about trying to find foods that might appeal to me. He encourages me while I am eating by saying eat at least 3 more bites, now you have to eat something, you are doing a great job or you can stop, if you do not want anymore, (reminds me of working with a child). He is so patient and such a wonderful caregiver. He is back at work and they are certainly glad to have him back in his office.

I talked to the nurse at the dialysis center about having my permanent/temporary catheter replaced with an Arteriovenous Fistula (AVF). This is located in the area of the arm, above the wrist and below the elbow. My arm may be too small and if so, I will receive an Arteriovenous Graft (AVG), located in the same area as the AVF. The nurse (Pat) is starting the process of setting this up. When the Fistula or Graft is inserted, it will take 4 to 6 weeks for it to heal in before it can be used. They will continue to use the catheter I have and will remove it when the new one I ready to be used.

We went to my nephrologist in Dallas, Dr. Andrew Fenves, today and brought him up-to-date on our time in Houston. He kindly said he was glad it was over and I was getting better. I took him the results of the blood work from M. D. Anderson and he is encouraged by the creatinine numbers and feels there may be a chance that I can go off dialysis in the future. No promises from anyone about this possibility but we feel there is a chance. It would be a wonderful thing if this could happen.

Thanks to A.G. for assisting me with this blog. He has been great in taking over when I am unable to do so. Thank you for your notes, e-mails, calls, prayers and well wishes. I appreciate you all more than you can ever know. It has meant so much to my family and to me.

La Donna and Arthur are back in Weatherford. They arrived Friday. Robert and I spent Saturday and Sunday with them. La Donna is of course not ready to start training for the White Rock Marathon, but she is stronger than I though she would be. We all went to church Sunday and then went out to eat. After Robert and I left, they went grocery shopping since they had not done so in about three months. La Donna will begin dialysis and blood work in Weatherford now.

La Donna’s computer in up-and-running, but making it through the day is currently of greater importance than posting. She will be posting soon. Until then, I would like to say thank you to our family, friends, and extended community we have met through this blog. You are and will always be in our thoughts and prayers.

Nothing seems to be easy during this trip. We went today for the bone marrow biopsy and aspiration. I had this done with sedation and it went well. Since I had nothing to eat before the procedure, we stopped at the cafeteria and I had a bowl of cereal. We proceeded to the Asperses Clinic and as I started to move to the recliner, the nurse said; “ what do we have here” and I could feel something wet and cold. Sure enough the area where they had done the procedure was bleeding rather badly. It took several minutes to clean it up and for it to stop bleeding.

They took blood samples, tested it and my platelets were only 16. I was given Zofran (to keep my stomach “settled down”) then I was given the Pentamidine infusion. Since my platelets were so low, I was given Benadryl and then a transfusion of platelets. I was also given a transfusion of Desmopressin (a platelet binder). Instead of getting back to the apartment this morning, we got back about 3:30 but a least the bleeding has stopped.

We have dialysis in the morning at 6:30 and should be checking out of the apartment around 2:00. We are anxious to get home but with our luck, who knows.

Thanks to A.G. for the update on our situation.

The doctors were pleased with my progress, other than the fact that my platelets and hemoglobin were not numbers that were increasing to the level I need. April 21st

I had an appointment at M D. Anderson to have my numbers checked. Dr. Anderlini’s Physician Practitioner (Jill) came into the room and first thing she said was, “You have no blood.”

She was right because my hemoglobin was only 6.7 (normal is 12.0-16.2) my platelets were still very low. They ordered 2 units of blood one of platelets and a unit of potassium. The platelets and potassium were given with no problem then, I received Tylenol to help my body accept the blood. The first unit was almost complete when I began to feel like I was smoothing. It became worse and I told Arthur I could not breath. The nurses’ station was across the hall from the room we were in and instantly I had about five men and women from the medical staff in the room. They ended the transfusion and started giving medications to get rid of the reactions. I was monitored there and they found my blood pressure to be 190/94. The diagnosis was that the blood was given too fast and my body could not handle it at that rate. I have received several units of blood but this was the first time I had a reaction.

Later in the evening, we were sent to the Emergency Room because doctors are in that 24/7. I was monitored throughout the evening and given an E-Ray of my chest. They found a great deal of fluid in my chest and in my lungs. At 2:00 AM, I was sent to ICU for dialysis. At 6:30 AM (the end of the dialysis), we were sent back to ER. Because the hospital was so full, we remained there for a day and a half. At 1:00 AM, were finally sent to a room. I was in dialysis three times to get rid of the fluid.

We were allowed to leave the hospital and return to the Houston apartment on Monday the 25th.

We returned to the hospital this morning and found the hemoglobin had risen to 12.1-thanks to the units of blood; my platelets are 25-up from 23. We hope this indicates that my body is starting to make them on its own.

Another bone marrow biopsy must be done before Dr. Anderlini can release me to go home. We are to have this done on Thursday. We will also have the infusion of Pentamidine for protection from pneumonia on Thursday. This is all in preparation for the release and our return home—our real home, Weatherford. We are excited about this; it has been a long time since January 19th.

La Donna and Arthur arrived back in Houston Wednesday; La Donna received platelets and blood Thursday. She had a bad reaction after receiving the blood. Her blood pressure shot up to very high levels. She has spent the weekend in the hospital. As of Friday she was actually doing better.

Hopefully she will going back able to leave the hospital tomorrow and go back to the apartment in Houston.

We were back at M. D. Anderson today and my platelets were back to 13,000. My hemoglobin is holding and rising a little so they did not give me blood. Jill, the P A, said she hates to give me blood because it looks like I am trying to take care of it myself. My red blood cells are still quite low and I am to self inject Procrit twice a week until the numbers are better.

Jill is helping get things set up for us so we can go home. The projected date is April 30th and that will be none to soon for us. If all goes well and everything goes well, we only have a couple of weeks left here. This time will be busy because we must get the catheter changed and make sure it is healing, have another infusion of Pentamidine (for PCP-pneumonia) this is given monthly for six months but I can have this done at home. We must also finish the paperwork for transfer to a dialysis clinic at home and my nephrologist in Dallas needs to be brought more actively back into the loop. There are some other things that need to be taken care of to insure a smooth transition in my treatment.

We are going home this weekend because Arthur wants to catch up on yard work and we need to turn the sprinklers on. I plan on sitting at home and enjoying myself and seeing our little dog, T. R. I will post again next Tuesday.

We finally feel there is an end to this and it is not far off.

We went to M. D. Anderson yesterday with the hopes that my platelets were holding, they were not. They had dropped from 42,000 on Sunday to 26,000 today. I asked why they have been on such a roller coaster ride (I knew they would go up after I received platelets) what I wanted to know is why they drop so fast in such a short period of time. The P. A. said it is because my system is not making any. She said the stem cells are not working the way they should (we had been told it could take four months before they were doing their job). She said in a normal person’s system they realize when it is time to make more platelets and they take care of business but mine are like babies that are having to learn all over again what to do. I have been my stem cells biggest cheerleader and encouraging them to get to work but they seem to not be listening.

While at the dialysis clinic today, I asked for them to set up an appointment for the removal of the temporary/permanent catheter that is at my neck and having the permanent one put in my arm. They have it set up for April 26th at Hermann Clinic. This will have to be done before we can be released to come home. We are hoping to be home at the end of April…now if we can just get everyone down here to agree with us. It has been a long time since the 19th of January and it will be good to go home.

I said I would report about being in the hospital after leaving ICU but I have been keeping you up-to-date on what is happening in real time. This is an entry on the last few days in the hospital.

I returned to the 11th floor at M. D. Anderson and the next week was spent gaining strength and rather routine. I had dialysis, received platelets, blood and medications. They were stabilizing my numbers and watching my progress in preparation for leaving the hospital. I fought nausea and tried to eat but often it did not set well on my stomach; this is even with being given medication through a drip to settle my system. A dietitian, physical therapist, an occupational therapist and the team of doctors and physician’s assistants saw me daily. My nurses and everyone on the 11th floor were great to my family and to me. They were always encouraging me and cheering me on when I would go for my daily walks. The walks would seem like short ones to most people but to me they seemed like a marathon.

Since I had been a bit “active” in ICU, I had a device in my bed that would play very loudly: She’ll Be Coming Around the Mountain” when it felt me getting out of bed. Arthur and Mark became very quick footed to turn it off before it bothered everyone on the floor. No matter how fast they were the nurses always checked to see if they needed help. The last two days in the hospital I promised them I would be really good if they would remove the device. I called them slats because that was what they looked like. The nurse agreed with me and it was removed. I was very relieved because it was like loosing a yoke.

That is briefly what took place the last week.

Arthur is back and Mark has gone home to his family. I appreciate him staying with me last week but his family is excited about his return home.

We went to the hospital for blood work this morning and the results were very encouraging, for a change. My platelets were 42,000-up from 13,000; my hemoglobin is 8.5-up from 8.3; white blood cell count is 3.1-down from 13.8 (normal is 4.1-10.9). I will be back at the hospital Tuesday and find out if I have been able to maintain that level. My body also needs to start making platelets and that will help stabilize the number as well as increase it to the level I need to be able to be released and go home.

This morning was dialysis and the doctor and dietitian were there and met with me while I was on the machine. The doctor told me while I am on the machine I am getting 60,000 units/mi of Epogen weekly. This is the same as Procrit so I do not have to self inject that while I am on dialysis and this is ok with me.

I do not receive the prescribed units of anything before I am given something to help my system accept the “intruders” that it is about to receive. Before the Pentamidine, I received Zofran to help avoid nausea and before the platelets and blood, I received Tylenol and Benadryl to relax me and assist the acceptance.

I am having bathroom problems and asked the doctor what he would recommend to help with this situation. I do not take anything unless I talk to my doctors first. He recommended Dulcolax and also a stool softener.

The dietitian told me my protein level is low and I need to add more protein to my diet. I do not eat a great deal but do eat each meal. I used to be a vegetarian but since last fall when I became so ill and went to the emergency room with dehydration, I have been eating meats. Everything tasted sweet or it had a metallic taste and protein was about the only thing I could eat. I am eating about all the meat I can deal with so I will add more dairy products. Eggs, milk and cheese are good sources but being on a low sodium diet it is hard to find a cheese that I can eat. She recommended a brand called Alpine Lace and said it has some low sodium cheeses in its line. I have seen it before and will try to find it again.

Arthur comes back tomorrow and Mark will fly out on Sunday. Mark is going to an Astros ballgame tomorrow night (Saturday) and believe me he needs a fun night out after being the caregiver this week. Mark has been a great caregiver this week but I know he is ready to get back to his family and they are ready for him to get home. I had appointments at M. D. Anderson yesterday and had blood work done. The numbers were very disappointing: platelets 13, hemoglobin 8.3 both going back down. They gave me a unit of both blood and platelets and I am to go back Sunday morning for blood testing and will wait for the results. If the platelets are not above 20, they will consider giving me another unit. Since my immune system is not good, they gave me an infusion of Pentamidine to help keep me from getting PCP (pneumonia). The infusion took two hours in the Aphersis Clinic at 9:00 a.m. After seeing Dr. Anderlini, Jill and Jill in his office, we found the bad news about the blood work results. Our appointment for receiving the platelets and blood was at 4:30 so we did not arrive back at the apartment until 9:30 last night. It was a late night because we knew we would be up at 4:50 to get ready for the 6:30 appointment at dialysis this morning.

On Wednesday the 23rd of March, we returned to the hospital for blood work and to check my temporary/permanent catheter that had been installed the day before at Memorial Hermann Hospital. It had bled a great deal and the dressing was changed. The long line catheter that had been put in my right arm in ICU was removed.

Thursday was a much-needed day off and Arthur and I enjoyed the day but the bleeding of the catheter continued. I knew I was losing way too much blood because the catheter area would break and here came the blood. Then my right knee, where I had fainted and fallen, began to bleed and we could not get it to stop for several hours. At times my nose would start bleeding. So, as you can see, I was having a major problem and was growing weaker.

Friday, March 25th was my first day at the dialysis center that was recommended to us. My creatinine serum levels indicate the problems with my kidneys. Normal is 0.7-1.4 and mine has been as high as 8.7. Today my numbers indicated the creatinine level is 2.4 and this is the lowest it has been in a very long time.

The dialysis takes four hours and counting the time it takes to hook you up and then to take you off at the end, the time is about 4 ½ hours. We get there at 6:15 AM and are finished about 10:45-11:00 AM. It does get to be a long and boring time; they do provide individual TVs for each chair and I can read, do crossword puzzles and of course…sleep. We are hoping to get the days down to two per week but the doctor at the dialysis center said that two days a week would put too much of a strain on the body. On the basis of my blood work that is done at the dialysis center, the decision will be made but it does not sound like the days will change anytime soon. I am always curious about the machines and the treatments I am having and asked how many times my blood went through the machine. I was told in the four-hour period, it would circulate through the machine about 86 times. Its purpose is to do what my kidneys are unable to do at this time. My kidneys are acting and I cannot really tell much difference than before all this started. This is encouraging to me. My days for dialysis at this time are Monday, Wednesday and Friday. My kidneys were in worse shape than they had thought and I had less than 30% output.

Tuesday the 29th we returned to M. D. Anderson to find out what the next step was to be. I had blood work and my numbers were not good. Examples of the numbers are: white blood cell count 3.0 (normal is 4.1-10.0), red blood cell count 2.88 (normal is 4.00-5.50), hemoglobin 8.8 (normal is 12.0-16.2), platelet volume 9-critical (normal is 140-440). The dreadful platelet count was the reason of the excessive bleeding. Dr. Anderlini told us that my platelet count must reach and stabilize at 80 so I have a way to go. They are giving me platelets and blood to help jumpstart my system. Today, April 5th, the numbers are: white blood count 2.6, red blood count 2.88, hemoglobin 9.0, and platelet volume count 21. The low hemoglobin is a major reason I am light headed so they are giving me blood occasionally to help bring this up.

A.G. (our oldest son) came down last Friday and reported for duty so Arthur could go home and take care of several things and go to work this week. A. G. left on Sunday afternoon and Mark (our youngest son) came in Sunday evening and will stay until next Sunday morning, when Arthur returns. It is great having them here and I know they had to rearrange their lives to be able to be here but it does give Arthur some time away and he can get caught up on things that need his attention.

Our days now are dialysis-MWF and M. D. Anderson-TTh and sometimes on Sunday so there goes the week.

I said I would post about the time in the hospital, after I returned to my room from ICU. I will do that in a later posting but since I have not posted for a few days, I want to update you on what has been happening to us since we returned to our Houston apartment. This includes the last day in the hospital (Tuesday 22nd of March).

Our Tuesday started at 4:00 AM when the nurse came in to draw blood. I still had my pic line for collection/and administering but he could not get it to yield the blood he needed. He finally called for help and the lady who came was able to get the blood but through a direct stick. By this time it was almost 5:00 and I was to be taken down for dialysis. Sure enough they were there and wheeled my bed and me down for the dialysis. We were back in our room about 9:30 and they were preparing the papers to release us from the hospital. After we saw several doctors and I rested awhile, we were released about 11:30. We were sent to Memorial Hermann for the insertion of the temporary/permanent catheter that is primarily for receiving dialysis. Fifteen minutes after I was out of surgery, we were released and we felt this was a bit of a rush. We were used to M. D. Anderson and their patience and caring for us. I was still bleeding a small amount but they assured us it would clot and everything would be fine.

On the way back to our Houston apartment, the warm sunshine felt wonderful and it was a beautiful Texas day. I think this is when reality really hit me because I was seeing things I remembered from before the hospital stay. We arrived at the apartment and Arthur asked if I thought I could walk to the apartment, it was just a short distance. I said I felt good and I thought I could. I made about four steps and remember my legs feeling weak, my head spinning and then my whole body going limp. The next thing I remember was Arthur calling my name and talking to me. I felt pain in both of my knees and in the area of the new catheter. A bench was not far from where I had fainted and he asked if I could make it there and I half crawled to it. I was sitting and gained some strength while he was setting up a trail of chairs for me to walk by and sit on each chair until I could make it to the next chair. It worked and soon we were into the apartment. We soon realized that my new catheter was bleeding profusely. Arthur took the dressing off cleaned and redressed it. Telling me to lay very still and hoped it would stop bleeding. I remember my knees hurting and I said a couple of times that my knees really hurt. My knees were the least of his worries because of the amount of blood I was loosing through the catheter. When the bleeding stopped, I asked for a cloth to wipe my knees and he wiped them (I still do not feel he had the sympathy for my knees that they deserved). My knees remind me of when I was six years old and learning to roller skate because my knees always looked like a war zone.

He unloaded the things we had at the hospital and prepared me a couple of Tabor eggs and toast because I had not eaten for 24 hours and was weak from hunger as well as from the lose of blood. Then he almost collapsed from fatigue; I have never seen him so tired. I thought I was going to lose him and there was nothing I could do because if I moved, the bleeding would start again. Soon after arriving at the apartment, we went to bed that was about 7:15 and I think we were both asleep by 7:18. The next day Arthur was his usual self and taking charge of everything. I think he was exhausted from mentally from the strain and physically from all that was taking place. I thank God for him everyday because I could not go through this without him.

Enough for this posting but Arthur calls that Tuesday the day from hell.

Arthur returned on March 13th and as soon as he saw me, he knew something must be done. He said first, he wanted something on my hands to keep me from scratching my face so I was “fitted” with white fuzzy gloves. I was scratching so badly that I was becoming a problem for myself. I told Arthur that I did not have to worry about hell because I was already there. My condition continued to deteriorate and on the 15th of March, I was sent to ICU. I was in a state of coma and did not open my eyes until Saturday the 19th of March. During the time I was in ICU, another catheter was installed in my right arm to receive medication and to take blood samples. I did not open my eyes or respond to anyone or anything for approximately seven days. As I was coming out of the coma, I remember lying in bed in a facility and being very tired. There was a clock in my room and I knew I needed to go to the grocery store and it was getting late but I was still so tired that I thought I would rest for just a few more minutes. I could see people in the other room through glass doors and it seemed they were trying to trick me by moving from place to place when I was not looking at them. Then in the back of the room, they seemed to move on people movers because they would move across the room but make no walking motion. I remember some of them coming into my room, call my name and press my toes and thumbs. On March 19th when Arthur was allowed into my room, my eyes were open and I recognized him and smiled but was still unable to speak.

On Saturday March 20th, I was trying to talk. The feeding tubes had been removed and I was being fed a liquid (Arthur called kangaroo juice). Late that afternoon our youngest son, Mark, flew from Milwaukee and arrived at the hospital. I immediately recognized him and reached out to hug him. We hugged and I continued with conversation and Mark understood and asked me if I said, “I want to go home?” and I said yes and now! The remainder of the day and night, I insisted I was going home. I even offered to make my bed, not let anyone sit on it and mop the floors if they would let me go home.

Visiting times in ICU are limited and Arthur and Mark had to leave. Mark came to our apartment in Houston and Arthur stayed in the waiting room. I was still not completely in the real world because I kept getting reality and imagination confused. The television was on in my room and I saw a news show that frightened me and I let the nurses know about it. A nurse came into my room to comfort me but I would have none of that. He asked what had frightened me and I told him it was something I saw on T V and I was afraid and knew I could not trust anyone or anything. He said I was safe there and didn’t I feel I could trust him. I said that I could not trust him and remember being so frightened. I finally told him I wanted to have the station changed to Fox News because it was the only news I could trust. He tried to find it but could not at the time.

He left and I was trying to go leave that place and fell out of bed. Shortly after that Arthur came back in and found me on the floor. He told them he would spend the remainder of the night by my bedside. They allowed him this accommodation and I remember occasionally looking to see if he was still there and he was and I was then able to rest.

Sunday afternoon I was transferred back to the Stem Cell Recovery Floor much to the relief of everyone (especially the nurses in ICU).

The next posting will be about my last week in the hospital

WOW, what a ride! I want to thank A.G. for keeping you all informed of the road we have taken.

How fragile the mind is and how reality and the imagination can become so intertwined. I want to fill in on some of the things that went on and I am the only one who can because for about a week I lived in my own little world.

I think I lost reality before those around me realized that I was not walking in the same direction they were for each step. I remember Arthur and I being given a few days off and we went home, to Weatherford. We enjoyed that time because on our return to Houston we knew that there would be some rough times ahead of us…little did we know how rough. I remember going to the hospital and getting ready for the next phase of the journey. I remember getting my stem cells back. Each time they give you anything such as stem cells, blood or platelets; they ask for your name and M. D. Anderson identification number. Two nurses must accompany the “juice” and verify that the correct person is getting the offering. We have talked about me receiving my stem cells and me receiving the chemo so I will not go into that again.

This is the last that I remember in full days but I do remember small pieces of the next few days. I remember A. G. staying with me, us talking and enjoying visiting with each other even though I had already started the trip to my own “Land of OZ”.

THIS IS REALITY and I do not remember any of it but have been told: A.G. wanted to stay with me and he was a great caregiver he was probably the first to see my decline and called Arthur on Saturday the 26th of February. Before Arthur arrived, my brother and sister-in-law became my caregivers. They arrived at 3:00 p m and this enabled A.G. to catch his flight home. By the time Arthur arrived, my condition had improved so he returned to Weatherford on the 27th of February.

THIS IS REALITY although I do not remember any of this: Marilyn filled me in on the week. She said through Thursday, I was talking, asking questions and responding to everyone. My oxygen intake was too low so I had to wear an oxygen mask and Marilyn had to replace it. She said I called her Nurse Ratchet because she was intent on me having the oxygen I needed. I had such itching that Marilyn took away my back scratcher but would try to give me relief by using my pillow to rub against my back. She said I also wanted to use the cell phone and told her it was o.k. but she told me it might not be a good idea to use it with all the machines in the room…she had to hide it in a drawer. When asked how I was doing, she said I would say fine other than my throat was very sore (I had sores in my mouth and my tongue was swollen).

She said I was given Morphine and things went down hill from there. Late Thursday things began to change and the nurses and doctors were in my room much more of the time. By Friday, I was not responding.

This is part of the story and I will continue tomorrow. I do want to thank everyone for their good thoughts, best wishes and prayers, we feel these helped bring me through.

La Donna is getting stronger. Her physical therapy continues to progress. She should be in her apartment soon and this blog will have much more detail.

La Donna and Arthur are back in their apartment in Houston!

La Donna will start making her own blog entries tomorrow. You will see many changes to the blog. One, there are going to be contrasting entries for the time La Donna was beginning to lose clarity, contrasted against the reality of what was going on around her.

There will also be descriptions of what was La Donna’s reality was while she was going through some of the most tumultuous times.

Thank you for your patience with your humble webmaster. She’s back, and there will probably be a tremendous increase in relevance to the entries herein.

God Bless,
A.G.

La Donna continues to prove she is the toughest woman in the world. She had another day of incremental improvement. She is still eating and her arms continue to gain strength. La Donna wants to begin walking again and physical therapy will be starting soon. I (A.G.) hope to be heading back to Houston around the 1st of April. We are hoping La Donna will be back in the Apartment by then.

Thank you for all of your prayers, thoughts, and e-mails. All have been heard or read. Please understand that the last two weeks for La Donna have been so harrowing that simply having e-mails read to her is still taxing and it might be a while before she is able to reply.

More Good News!

La Donna is even better today than yesterday. She has been able to talk all day and she is starting to give the nurses a hard time. She told them if Arthur couldn’t stay with her tonight she was going to walk out of the hospital.

The only new problem she is experiencing is anxiety; she has been given medication for it. I will try to get information on the anxiety medication soon.

GREAT NEWS!!!

La Donna had a very good day. She is still in ICU, but more lucid than yesterday. La Donna’s youngest son Mark arrived from the Episcopal Seminary in Nashotah, Wisconsin. So there are more reinforcements for her in Houston.

La Donna was able to talk a little bit today. In fact Mark understood some of the first words in a week. She told Mark she wants to go home, in fact she has told Arthur and Mark that three times today. Her sentiments are echoed by her entire family. We want her to come home too.

Thanks again for you interest in this blog and God bless you all.

La Donna was incoherant again for most of the day. She did respond to her name this morning, but that is about it. She seems to be improving since the time she first entered the ICU. There has been a tube inserted in her nose to feed her. I haven't mentioned it before, but she hasn't eaten since Saturday. The main thing I want to emphasize though is that there seems to be incremental improvement. We are taking "baby-steps" currently.

I would like to apologize for the length of time since the last post. La Donna has had a difficult week and very little information has come out of Houston. What I can tell you is that La Donna was starting to have difficulty with mouth sores and her throat. She has undergone a Morphine dose. Since that time she has not been very lucid. Sunday she was moved to ICU and started dialysis. Arthur reports that she was doing so much better today; the dialysis seems to be doing some good.

La Donna is still weak from the chemo. She is working though the catheter. Though much of the fluid has been relieved, another catheter has been installed. She received another unit of blood and platelets because her hemoglobin’s are still low. She is still bed ridden and only able to take on soft liquids.

A.G. is back in Euless and La Donna’s Brother (Jerral) and Sister-in-Law (Marilyn) are going to spend a week with her. La Donna had a challenging weekend. Her breathing has become labored, which in itself is not unusual following chemo. But she was also getting a large fluid buildup in her chest. A catheter was installed and took care of a lot of this problem. However a fungal infection in her tongue and glands has developed and talking has become a challenge.

I will be talking to mother tomorrow over the phone if she is up to it. Updated for the next two weeks or so will be from her telephone dictation or from the caregiver in Houston at that time.

Thank you for your interest and prayers.

Special Note: Some of today’s entries will serve to supplement yesterday’s entries.

Today was a rough day, although they have the nausea pretty much under control with several medications including the Scopolamine patch I wear behind my ear. They’ve added a new medication Fenoldopam I’m hoping that helps with my kidneys because my Creatine level is still at 3.5. Yesterday my hemoglobin was low so they gave me a unit of blood and today I received platelets because they are now at 17. From chest X-Rays my lungs are showing some fluid retention, even though I’m taking heavy diuretics.

I was put under oxygen yesterday because every time they tested for oxygen in my blood it was very low. I have much more shortness of breath, weakness and our daily walks have been shortened. I was also put back on Nupegen shots yesterday

I have an unidentified rash that has developed under both armpits; they have sent a specialist from Bone Marrow Transplant (BMT) to evaluate. She felt the rash was a reaction to the chemo and she’s sending a save to help. She is also sending a milder soap to wash with. Related to the rash, they warned me not to use deodorant while taking chemo.

Yesterday we were asked if we would like to move into a larger room that had just become available and we took advantage of it. The room we have now is considered a suite and gives us more room to enjoy. It’s dark outside and I’m looking at the Houston skyline it’s really quite pretty. The two large windows in the room have become our portals to the world.

I must go now; we are getting ready for another one of our short walks.

Today is Day +2 and as promised it has been a rough one. La Donna has slept most of the day. She was only able to take one walk due to nausea. She is very weak and sore, but the medication has taken most of that away. Eating is now an even greater challenge. Our big goal tomorrow is to make it through the day with as little pain and nausea as possible. I am sorry that tonight’s entry lacks the usual substance, but today has truly been an hour-by-hour struggle.

Today is Day +1 Dr Anderlini’s explanation for what the stem-cells are doing is that they are setting-up shop. To paraphrase the stem-cells have to get ready, you cannot have a baby in one day, in the same respect the stem-cells need time to start working. The nausea for the most part has passed; it should with all of the medicine I’m pumped full of. Tomorrow is Day +2 which means I’m entering what Dr Anderlini says will be the worst time. Days +2 thru +7 will probably get hairy. The pain in my lower back is still there, it’s about the same as yesterday, but that’s one of the things that the drugs haven’t relieved. Food is becoming very unappealing but I’m going through the menu each day and trying to pick things I can eat.

My tongue has developed thrush, it makes a coating on top of your taste buds and therefore you cannot taste anything. They’ve given me medication to try to take care of this.

Cancer, chemo and heavy medication tend to deregulate your bathroom habits. The staff is very aware of and works with you help correct this problem.

Personal Notes: They advise us to eat whatever we can. But you might want to avoid some of your favorite foods while you are so sick, because often when you’re feeling better and try to eat these foods again the memory of how bad it tasted when you were sick overpowers any desire for that food.

When we were having the stem-cells collected they told us the anti-coagulant that was put in with the stem-cells would have a strange smell when I received them back. A.G. says the room smells like tomato paste. I haven’t noticed it but other people that come in the room have noticed.

We are celebrating two birthdays in our family tonight. Today is Arthur’s birthday and since I received my stem-cells back today it’s my Birthday too. The hospital looks upon 0 Day as your birthday.

My stem-cells started going back in today. There were three bags total that were given approximately 2 – 2 ½ hours apart. The bags with less cells go in quicker, this has two drawbacks; obviously the bag has less cells but secondly it runs through the line faster, and it seems to hit my system pretty hard. There was nausea as the stem cells went in, but the nausea was not as bad as the pain in my arms and chest though. I was given Atavan and later a Scopolamine transdermal patch which is actually a motion sickness drug. These drugs seemed to alleviate much but not all of the pain. I was however able to sleep much of the day, which has made a big difference.

Before the stem cells come up the, lab “washes” the cells. The way they explained it, they’re trying wash the red blood cells and any other impurities to get as close to pure stem-cells as possible.

It’s been a tough day; the last two days have been tough days. But we’re just taking them one hour at a time. Small triumphs become major events.

The food at MD Anderson is really quite good. They have one small café that stays open 24/7. The patients are given a menu to order from as directed by your doctor. The menu has a good selection and until I got to feeling so nauseous, I enjoyed the meals.

Arthur went home Sunday to try to get caught up on work. Our oldest son A.G. is with me this week. A.G. is helping me with the daily journal entries from my dictation.

First a positive note, the Ambien worked like a charm last night. I only needed one pill and I actually had restful sleep.

Today is the first day of extreme nausea from the chemo. Zorfran is now prescribed every 8 hours for the nausea, I am also receiving Phenergan. These medicines are only able to curb some of the nausea. It has become very hard to keep any food down. This morning I wasn’t able to keep down granola, I was unable to eat any lunch, but I was able to eat a bowl of Jell-O and a few bites of pudding for dinner.

Interesting Notes: While in the hospital I have been given a plastic cylinder called incentive spirometer “The Puffer.” It has a tube for you to suck air through; this is to help fight pneumonia.

I have talked about people walking in the halls; this is actually a very important part of your routine while you are in the hospital. You would literally not be able to walk if you allowed yourself to stay in bed the whole time. Three to four walks a day are recommended around the pods on the 11th floor. They recommend that you walk about 10 minutes each time if you can.

Final Note: This is Day -1. Day 0 (or as A.G. insists on calling it D Day) is tomorrow. I will receive my stem cells tomorrow.

I appreciate your continued best wishes, thoughts and prayers. I also know there are unanswered e-mails in my inbox, please know that I will get to them as soon as physically possible.

Today, the second and last chemo dosage was given to me through my subclavian catheter. So far the side effects I’m feeling are extreme shortness of breath and the inability to sleep. They prescribed Ambian for the sleep problems. The other side effects will kick in later this week.

Tomorrow is a rest day. Tuesday I will receive my stem cells. This seemed like such a short period of time between receiving the chemo and receiving my stem cells back. I asked Dr. Anderlini if there would be a possibility of the chemo destroying my stem cells. His explanation was that “the chemo itself has a short half-life.” The body gets rid of it and by the time I get my stem cells back the chemo will have dissipated. Although the chemo itself will no longer be in my body the side effects will not lessen.

When they talk about stem-cell transplant, they use a timeline. This countdown features the day you receive your stem-cells back as day 0, the days of testing and stem cell collection are considered negative days (e.g. Day -2, Day -1). The days after you receive your stem-cells are plus days. So I am in Day -2 currently.

Good oral hygiene before and during the transplant is extremely important. You must have a dental checkup; this must be done within 30 days of your appointment. In your information packet, you receive a letter that you must take to your dentist at the time of the checkup and he must sign and date it. You bring it with you when the transplant process begins. During the time you’re in the hospital you are given two types of mouthwash that you are expected to use at least four time each in a 24 hour period. This is to help prevent bacteria from building up in your mouth and lessen mouth sores.

Checked into the hospital last night (2/18/05), Room 1142 will be my home away from home for the next three weeks. The staff on this floor has been wonderful. They are upbeat, kind and very thoughtful.

Vital signs are taken every four hours and adjustments to my medications are made immediately. Today is the 19th and the first day of receiving the Melphalan it is given through my subclavian catheter and it took about 30 minutes for the unit to empty.

Personal Note: It is not a pleasant feeling knowing you are watching a liquid go through the tubing and into you that is going to make you sick, loose your hair and miserable for a period of time. The saving grace of this is that I have confidence in my doctors and I realize that this is my best hope. I know that it will not cure either the Waldenstrom’s Macroglobulinemia or the Amyloidosis but the object is to slow down the depositing of Amyloid in my kidneys. In very simple terms the Amyloid deposits are like chewed gummie bears attaching themselves to the walls of my kidneys. My doctors might question my description but I think you get the idea.

I had a terrible headache last night and was given two Darvon, which make me extremely nauseous. Had a light breakfast but still had the headache and nausea. I think it was a sinus headache, because I have them at times.

At 10:00 AM the nurse started the pre-meds (Decadron and Zofran) to help my body accept the chemo.

I was told to chew ice 15 minutes before the chemo started and at least 30 minutes after the chemo was completed. This is to help prevent mouth sores. I love to chew the soft ice chips so I finished off the pitcher and requested another.

I will receive the second unit of chemo tomorrow morning.

Until today, I had never received a blood transfusion. Due to my hemoglobin being so low, it was necessary. I received two units of “packed blood” which means that they can choose what is needed by the patient and give that to them. Before the blood transfusion was started, I was given two Tylenol and they started a saline unit and a unit of Benadryl piggyback on my catheter. The Tylenol was given to help with any discomfort and the Benadryl was given to help with any allergic reactions. The blood was started after about fifteen minutes and each unit took about 2 hours to administer.

We are leaving in about 30 minutes to check into the hospital for the next phase of the treatment. A.G. (our oldest son) and will be coming in tomorrow to stay with me and let Arthur go home for a week. A.G. is my web master and will keep the web site updated. I will dictate to him and he will do the updates.

Starting the next phase with a great deal of anxiety, fear and hope.

My specimens showed that my numbers are still not great. My hemoglobin continues to drop and is now 7.9 so I will have a transfusion tomorrow before I go into the hospital. The transfusion will be at 1:00 in the afternoon. Some have asked me to give the “normal” numbers when I quote mine. Hemoglobin should be between 12.0-15.5 and mine today was registered at 7.9.

My creatinine serum has gone higher and now stands at 3.5. It should be between 0.8-1.5. Creatinine serum deals with the kidneys and the Secondary Amyloidosis is the problem with the kidneys and this is the main reason for the transplant.

We met with Dr. Anderlini this afternoon to finalize the plans for the transplant. To illustrate that M. D. Anderson is a 24/7 facility, I will be admitted to the hospital at 11:00 P.M. Friday evening. The high dose chemo (Melphalan) will be administered on Saturday and Sunday. Each day I will receive the chemo for about an hour. Monday will be a day of rest and then Tuesday I will receive my stem cells back. There were six days of collection and thus there are six bags of cells. These bags will be combined into two larger bags and will be given back to me on Tuesday. I will receive one bag in the morning and one in the afternoon. That will complete the chemo and the returning of the stem cells to me. I will be in the hospital for about three weeks total. The rest of the time will be to monitor my progress and to bring me back to a state that will allow me to function on my own.

Chemo does not "kick in" immediately and the estimate of the time before I will truly feel the effects will be a few days after it is administered. The last time I had chemo (2Cda) the fourth and fifth days were the worse. Melphalan is a chemo that will take its toll on the patient and it will not be an easy time for me. They will provide for my needs with medications to lessen the nausea, flu like symptoms and other effects of the chemo. They will do their best but will be unable to make it a “walk-in-the-park”. Dr. Anderlini does not “sugar-coat” anything but he is also not an alarmist. He has told us this will not be an easy treatment or an easy time for me but all concerned feel this is my best chance. The amyloidosis has not shown up in other areas but they will have to be aware that it is present in my kidneys and nothing can guarantee that it will not appear elsewhere. All tests have shown it is not in other organs so hopefully it is only in my kidneys. This is considered a “cutting-edge” treatment for patients with Waldenstrom’s Macroglobulinemia and Secondary Amyloidosis and there are so few of us with the combination of the two diseases that there are not many case histories to study. My hope is that my treatment will be successful and act as a teaching tool for the medical profession for others who follow.

I will go into the hospital the 18th of February and should be out by the end of March. I will then be an outpatient and will still be monitored daily with blood specimens. After a period of time, I will be monitored 2 or 3 times a week and when all is back in order; I will be released to return home. This should be about mid April.

The question has been asked on my web site if there is anything done to the stem cells while they are out of my body other than adding the anticoagulant. I did not think so but today I asked Dr. Anderlini and he said nothing is done to them but the anticoagulant and the freezing process until the time they are needed.

I had mentioned that the large line subclavian catheter was to be removed and a smaller line with three lumens would be installed. Dr. Anderlini preferred the present style so we did not change it.

Back in Houston and the weather was quite nice and sunny this afternoon. We start early in the morning with blood work and then see Dr. Anderlini in the afternoon. We will get an updated schedule to see if any changes have been made.

The trip home for a few days was a surprise to me but was a good break before the next phase of the Stem Cell Transplant starts. Enjoyed seeing T. R. (our 12 ½ year old dachshund for a few days). Our son and grandson, A.G. and Robert, are keeping him while we are gone.

This is just a little personal note: I am not sure why the lips become so dry when going through medical procedures but they seem to and must be treated often. I now carry lip balm with me at all times and use it often. They seem to quickly get so dry even to the point of hurting and it takes several days for them to heal. This is just a suggestion to act before they get so very chapped. Burt’s Bees’ Beeswax Lip Balm and Chap Sticks with Aloe work quite well. If they are really chapped, you may need to use an antibiotic cream to help them heal.

La Donna and Arthur had a relaxing evening at the Purple Cow in Fort Worth wtih their grandson Robert. They will be back in Houston on Wednesday. Thank you for your interest.

The final total of stem cells is 5,170,000. The last day of collection was the best at a total of 1,400,000.

Today I had a blood specimen collection and my numbers are still off but they are not worse than yesterday so Dr. Anderlini is not going to give me blood transfusions. Now I will have a week of resting to allow the Neupogen and Leukine to get out of my body and for my body to rebound from the collection. I will go back on the weekly Procrit shots for two weeks then off them for awhile.

We have no appointments until next Thursday so we are going home for a few days. We will return to Houston on Wednesday and I will go back for blood specimen collection Thursday morning and to see Dr. Anderlini in the afternoon. Then I will go into the hospital on Friday and the high dose chemo will be administered on Saturday and Sunday. Then a day of rest on Monday and on Tuesday, I will begin to receive my stem cells back again. The stem cells are frozen and waiting to get back to work.

Before we left the hospital, Arthur had to show them he could change the dressing and take care of the subclavian catheter. He passed with flying colors so we were given our supplies and sent on our way.

This will be the last posting until we return to Houston on Wednesday. Thank you all for your interest, kind words and prayers.

We returned from the hospital with good news. The Stem Cell Collection for yesterday was 1,080,00 and this brings the grand total to 3,770,000. Today will be the last day for collection because Dr. Anderlini said adding today’s total to the total collection will bring the numbers to where we need them. Maybe not 5,000,000 but close enough.

They are very careful to make sure I get my own stem cells when they do the transplant. Two vials of blood are drawn before each collection and this is labeled, then the stem cells are labeled and shown to me after the collection, then a vial of the collection is drawn and labeled and this is where they get the numbers of stem cells for each day collection.

My other numbers are pretty bad and I have to go in the morning for a blood specimen and they will check the numbers and if they remain where they are today, decisions will have to be made. There is a good chance I will have to have transfusions. My hemoglobin is 8.5 and the norm is 12.0-16.0. My Magnesium is 1.6 the norm 1.8-2.0 and Magnesium was piggybacked to one of my lines today during the collection and return.

After giving the blood specimen, I will return to the Pheresis Clinic to have the catheter changed. This large line will be removed because it was installed and used in the stem cell collection. A smaller line will replace it and it will have three lumens because there will be so many medications administered to me during the transplant.

We have an appointment with Dr. Anderlini at 1:00 tomorrow and he will answer any questions we have and give us our upcoming schedule.

Well we continue to progress and will soon move to the next phase.

The weather outside is dreadful, again. It has rained or been dreary everyday since we have been here. We got good news from the hospital, though. We collected 970,000 stem cells yesterday so we are over half way at 2,690,000. We collected again today and if we got a good number like that, we will be well on our way to finishing this phase. Dr. Anderlini said we could go with anything over 4,000,000 with 5,000,000 being the optimum number. We were feeling much better than last night. My appointment is in the afternoon again tomorrow and that puts us back at the apartment quite late in the evening.

Some have asked about the machine that is collecting the stem cells. I ask questions everyday about what is going on and they are very cooperative in answering them. My catheter has two lines with two lumens it is a large line catheter to accommodate all that has to take place.

One line delivers the blood to the machine and a line feeding a saline solution is piggybacked onto this line. This prevents blood clots in my blood when it is in the machine. Then it enters the machine and a centrifuge about the size of a pie pan whirls the blood and the “parts” are separated then go to the various areas of collection. When the stem cells are collected and deposited into the proper bag, the blood is then returned to me with calcium added that through a piggyback on the returning line. The time I am on the machine is determined by my height and weight; I am on it for 3 hours.

M. D. Anderson can really be a happy place. That may sound odd because most think of it as a place of sadness, pain and fear. Everything is done to make it a pleasant place to be and the holidays are not forgotten. Today I had to have blood specimens, as always, and there was a waiting period until the collections were to begin. We went to the cafeteria for a bite of lunch and while we were sitting there, we heard a band playing; “When the Saints Go Marching In.” We had a front row seat for a wonderful Mardi Gras parade down the hall outside our window. To our delight, here came a parade of the children who are cancer patients at M. D. Anderson and could participate in a parade. Some were walking, some had a volunteer rolling their portable medicine transport, some in wheelchairs, some little ones in wagons and some wee ones in strollers. There were lots of smiles and the kids were having a wonderful time. Volunteers along the way had beads and would add them to their collections. The kids had masks, crowns, wands and all kinds of Mardi Gras costumes. It was a wonderful site but brings home how terrible this disease is for anyone but the children are the hardest to watch. It is so unfair for them and for their families.

Just back from the hospital and Friday’s collection was down, again. It was 350,000. That was the last day of collection before I started the two injections a day of Leukine. I started those after I returned to the apartment Friday (still giving myself the four shorts per day of Neupogen). I think the collection today will answer a lot of questions about going on with the collection. We are hopeful that the numbers will be up and there will be no need for decisions.

The appointment tomorrow is for 12:00-blood specimen and 1:00 collection so cross your fingers for a good gathering.

I am tired and achy; the desire for food is waning and I must make myself eat. I do not want to get in the same shape I was last fall when I ended up in the hospital with dehydration. I think it was due to the combination of medicines I was taking (when the steroid, Dexamethasone was added, my system seemed to be unable to handle it all). I was in the hospital for two days while they hydrated my system. If you get to the point you cannot eat or drink, please do not wait to see your doctor. Once you get to a certain point, you will have to have help. I could not even drink water because it had such a terrible taste. Everything tasted metallic or extremely sweet. Foods with carbs were intolerable because they tasted sweet. Something sounded like it might taste good but with the first bite, I would become extremely nauseous and unable to continue. After I returned home, friends brought me wonderful soups and stews. I could not eat the solids but the broths tasted great and I think were the answer for my recovery.

Numbers: February 7, 2005:
Creatinine Serum - 3.2 High
White Blood Cell Count - 42.4 High
Red Blood Cell Count - 2.59 Low
Hemoglobin - 8.9 Low
Hematocrit - 25.9 Low
Platelet Count - 94 Low

Saturday was a day of rest and I gave myself the 6 shots. On Sunday, we went back to the hospital for a blood specimen. We waited for the results because Dr. Anderlini wanted to have the results read and evaluated to see how I was tolerating the stepped-up medication. The only problem was my magnesium was low and I was given a couple of tablets. Back to the apartment for the day and continue the shots. We will start again on Monday for the collection.

One thing to always be aware of is to control your pain. I had been told this about 20 years ago after surgery and Joe, who has done the collection for the last two days, told me again on Friday. The reason is that when you are in pain, your body is concentrating on that pain and not on the matter at hand. The stem cell collection or any other procedure will be more effective if your body can concentrate on that and not on making the pain go away.

Started the day with blood collection then off to Infusion Therapy Clinic to have the dressing on the catheter changed. It had started bleeding during the night and the bandage was soaked with blood. They said to check with them if anything unusual happens to the site. The dressing was changed and they said this was not too unusual for this type of catheter because the lines are so large. They must be large to accept the Stem Cell Collection and the Transplant.

Next back to the Pheresis Clinic for today’s gathering. Yesterday’s collection was 570,000; at least we are over 1,000,000 now. I told Dr. Anderlini I was disappointed with the number today and he said it was about what he expected. He said the first day was a good collection and this was about what he felt would be more the numbers I would reach each day.

To give my white blood cells a bigger boost, Dr. Anderlini has added two shots a day of Leukine this is in addition to the four shots a day of the Neupogen. I must say I do look like a pincushion from all the shots. I do prefer giving myself these shots because I can do it at my convenience and do not have to spend as much time at the hospital waiting for them to do it. I have been giving myself my Procrit shots for several months now. Dr. Weber insisted I could do it and I said I had never given myself or anyone else a shot. She would not hear of it and said you will give yourself your shots. I found it is not all that hard. Now these are subcutaneous shots (into the muscle and fatty tissue and not a vein). A word of advise to anyone giving themselves a shot, let the vial or prepared shot sit at room temperature for about 15 minutes. The medication will not burn as badly if it is room temperature rather than straight out of the refrigerator. If you do not want to wait the 15 minutes, you can hold the medication in your hands for a few minutes and that will warm it up. Don’t shake it just hold it.

No collection tomorrow (Saturday) I will just rest and take the 6 shots. Then they want me to go in Sunday morning to the labs for a blood specimen collection and wait 1½ hours then go to the Emergency Room for the reading of the numbers. If there is a major problem with the numbers because of the new medication, they will contact a doctor for further instructions.

My Platelets have dropped to 114 because they are also being gathered with the stem cells. That is low but still manageable.

The second day of stem cell collecting is over and they gathered about 200 cc. The collection yesterday yield 800,000 stem cells and the target number is 5,000,000 so we have a way to go. I was a little disappointed but Dr. Anderlini said it was really better than he had expected. He said he is “casually optimistic” and felt with several collections, we will get the number we need. He said with my situation, he did not expect me to just throw stem cells at them.

I always ask questions about what is going on with my treatments. I asked today about the blood going through the machine and was told it goes through three times each collection. The time it takes depends on the size of the patient because the larger the patient, the more blood they have and it takes longer. My collection time is 3 hours each time and I am glad I am a small person. He said he had one patient who took 6 hours per collection. Now know what this really means, you are on your back in bed, hooked up to a machine and there is NO leaving that bed until the time is over. No matter what the reason, you are there until the treatment is over. This might be another good reason to practice weight control. We go back tomorrow for the same routine.

Any fellow Waldenstrom or Amyloidosis patients should discuss the possibility of a future transplant with you doctor before certain treatments are given to them. If I had known that 2Cda was so myelosuppressive, I would have collected my stem cells and had them frozen for future use. The 2Cda gave me several years of valuable time but it has made the collection more difficult.

Arthur was valedictorian of his class and passed his test on flushing the catheter and changing the cap.

Numbers on 2/3/2005:
White Blood Cell Count - 67.4
Red Blood Cell Count - 2.89
Hemoglobin - 9.9
Hematocrit - 28.8
Platelet Count - 152
Creatinine Serum - 3.1

My appointment with "Dracula" was this morning at 7:30 for a blood specimen. This will be done each day before the harvesting takes place. Then down the hall to the Pheresis Clinic for the first day of harvesting. The entire procedure took about 4 hours with 3 hours being the time taken for the actual harvesting.

My catheter has one insertion area but has two lines and then others can piggyback onto them. During the harvesting, one line receives my blood and it goes through a machine that separates out the stem cells then returns the blood to me, with calcium added. The calcium is administered through one of those piggyback lines. When the blood and calcium comes back to me, it is much cooler than the blood going out so there is a feeling of chill during the harvesting. They supply warmed blankets that help take much of the chill off during the harvesting.

My nurse, Gladys, told me to let her know if I had any unusual sensations. The only one I had was about one hour into the harvesting, I felt my lips tingling and becoming numb. I told her and she increased the amount of calcium I was receiving and within a few minutes, the sensation when away.

She showed me the collection bag and it looked like there was about ¾ to one cup of blood and she said those were my white blood cells and my stem cells. She sent a small sample to the lab and they can tell from that approximately how many stem cells they collected. They need to collect several million before the transplant can continue. Hopefully, I can produce enough stem cells that the collection will only take another day or two.

Arthur went back to his second class on catheter care and will take a test tomorrow on flushing and heparin cap changing. I will go back with him next week for him to demonstrate that he can also change the dressing. He is a great caregiver.

The four shots a day of Neupogen continues and we are back in the apartment. We are trying to find a good seafood restaurant close by our apartment for dinner this evening.

Well a new month is starting and it is a cold and dreary day in Houston but we got some good news this morning. My CE 34 now is 11 and the Neupogen shots have been increased to 4 per day (there was a misunderstanding by Arthur and me of what the doctor said. He said he told us 2 and 2 per day with 7-8 hours between. What we heard was 2 per day. Oh well, when I got back to the apartment I gave myself 2 shots). The Neupogen does make you ache all over. The ache comes from deep in the bones and is very pronounced but will subside when I go off the Neupogen.

Since this was the first day after the installation of the catheter, they wanted to check it and it was fine. I had no bruising or redness so their compliments went to the surgeon. We went to classes on care of the catheter and did well on the tests. Arthur will have to go to two more classes and then they will give him the supplies needed when the catheter is not taken care of at the hospital but at the apartment. The patient can do the flush and change the cap but the caregiver must do the cleaning. It is just too hard for the patient to maneuver everything and do it correctly. He will do a great job because he has done almost the same thing before. He had to take care of my temporary port when I received chemo back in 2000.

They have scheduled my first Stem Cell Harvest for 8:30 in the morning (Wednesday) so we are ready to start the next step of the procedure. I will be at the hospital at 7:00 to give blood, again, and then to the Pheresis Clinic for the first collection.

Later today I go for the next step of my treatment (receiving the subclavian catheter and start the stem cell collection). I have started itching all over and I am not sure if it is the Neupogen or nerves or some of both. It started in the head area and has spread to the rest of my body. There are no visible signs on me anywhere of a rash so the itching is inside. I cannot sleep but feel that is because of the anticipation of what is coming.

I have Restless Leg Syndrome and that is also bothering me tonight. I can remember my Mother having much the same problem and she called it the “the heebie-jeebies”…I think her name fits quite well.

I have taken a couple of Tylenol and turned the TV on…now that should put anyone to sleep.

We have just returned to our apartment from M. D. Anderson and I must admit I am a little disappointed because my Stem Cell Marker is not high enough.

We went in early for the usual “blood letting” that is required daily, then off to the Pre Op Center and had the subclavian catheter installed. It is on my left side and above the heart. They chose the left side since the temporary port that was installed when I received chemo (2Cda) in 2000 was installed on the right side. I am left-handed and this will be a learning experience to reach with my right hand until the soreness and pain subside. All went well with that but must say I am extremely sore and in some pain but have taken a couple of Tylenol and am sure it will get better.

After the catheter was installed, X-rays were taken to make sure it is in correctly and will pose no problem. Mine was fine and we were feeling pretty good as we arrived at the Pheresis Clinic to start the Stem Cell Collection. The catheter was fine but my CE 34 is not high enough to start the collection. It is 8 and they will not start the collection until it is 15. We were sent back to the apartment and I will self inject 2 more Neupogen shots and return to the hospital tomorrow morning, give blood to be tested and hopefully it will be 15. I plan on having a good talk with my stem cells this afternoon and tell them to jump to attention so we can move on with the procedure.

Please know we take all of your prayers, thoughts and best wishes with us each time we arrive at the hospital. I wore my beautiful prayer shawl, as I do each day and I have received so many compliments on it and I delight in telling them about it. A dear friend, Gale, heard about this project and requested that another dear friend, V.A. knit one for someone who was going to be gong through some difficult times. I received this wonderful surprise during the holidays and have felt the warmth and prayers that it shares with me. We have received so many wonderful gifts, cards, calls and e-mails from friends and well wishers that each one helps melt the miles away and makes us feel more comfortable.