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.
Friday, February 25, 2005
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 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.
Thursday, February 24, 2005
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.
Wednesday, February 23, 2005
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.
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.
Tuesday, February 22, 2005
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.
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.
Monday, February 21, 2005
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.
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.
Sunday, February 20, 2005
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.
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.
Saturday, February 19, 2005
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.
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.
Friday, February 18, 2005
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.
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.
Thursday, February 17, 2005
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.
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.
Wednesday, February 16, 2005
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.
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.
Tuesday, February 15, 2005
Thursday, February 10, 2005
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.
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.
Wednesday, February 9, 2005
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.
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.
Tuesday, February 8, 2005
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.
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.
Monday, February 7, 2005
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
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
Sunday, February 6, 2005
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.
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.
Friday, February 4, 2005
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.
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.
Thursday, February 3, 2005
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
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
Wednesday, February 2, 2005
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.
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.
Tuesday, February 1, 2005
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.
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.
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