My hemoglobin had dropped again to 8.4 so I had to get two units of packed red blood cells today. My platelets have risen another two points and are now at 19. We feel it is a good sign that they are holding steady and rising a little. Not sure the stem cells are working but I do feel they are trying to become more active. At least I keep telling myself that. While I was sitting there in the hospital, some pretty silly thoughts crossed my mind. I want to share them with you all. You have been kind enough to stay with me through this so I want to end the year with something silly then something serious.

The silly first:
Well I am now juiced up with someone else's blood. I often wonder if I will ever get an immense craving for something weird or decide to become a serial killer, a belly dancer, a garbage collector, a great artist or lap my water from a bowl like a golden retriever. You know I have no idea where this blood comes from and what their drives might be.

My New Year’s Resolutions are such as this:
Keep on exercising, eat better and lose about 10 pounds, get up each morning and bribe the Stem Cells to start working. Who knows maybe it will work.

Now the serious:
Please know that I am thankful for all my blessings. I have so much when there are others who have so little. I consider each of you my angels on earth who help prop me up with your good wishes and prayers. Thank you so very much. I am so thankful for my family, friends, my doctors, and others I come in contact who are in the medical profession and help me in so many ways and also the many unseen people who go to the blood bank and donate because without them, so many would be unable to live. I am also thankful for our military people who are so diligent in their jobs and keep us safe at home. So you see, when I weigh the good and the bad in my life; there is no contest I am very blessed.

Now to end on a lighter note:
Better go because I have a distinct urge to go outside and chase a car but wait I have to scratch myself first and I want to lap up a good drink of water before I whine at the door.

Take care and I love each of you

Would like to share some good news with you all. I have not received platelets in about two months and they are staying stable and even increasing a little. They had been staying at 14,000 for a while. Then they had risen slightly to 16,000 and yesterday they were 17,000. (140,000-440,000 is normal) This is good news because something is making the numbers rise because it has been so long since I have received platelets.

Week before last my hemoglobin was 9.4 and I received two units of packed red blood cells. Last week I was tested and my hemoglobin was 11.0 and I was glad but this week it was tested at 11.7 and now I am pretty excited. One thing is I do not have to spend today in the hospital being transfused but I feel something is happening to make the numbers stay stable and even rise. Not saying the stem cells have started working but something is happening and I am thankful for that.

I wanted to share this good news with you all because you have been there with me at the low times so even a little good news is worth sharing.

Finally got my Echocardiogram report back and it is pretty good. The tech and the doctor are amazed that my heart has not been damaged more after all it has gone through. The report is:

2D Findings:
Left ventricle size and wall thickness and systolic function, are normal.
Normal mitral valve. Moderate mitral regurgitation (a backflow of blood from the left ventricle into the left atrium in systole across a diseased mitral valve).
Thickened and calcified aortic valve cusps with reduced mobility.
Moderate aortic insufficiency.
Normal right ventricle size and function. Moderate pulmonary hypertension.
Normal tricuspid valve with moderate tricuspid regurgitation.
Normal atria.
No pericardial effusion.

Impression:
Sclerotic aortic valve with moderate aortic insufficiency.
Normal left ventricle size and function.
Moderate mitral regurgitation.

In short, my heart has problems but is still strong and pumping away.

Everything else is about the same, dialysis three times a week and still getting blood every two weeks. It has been almost two months since I have received platelets. They are staying stable and this week they went from 14,000 to 16,000. That is good news. Of course, they are far from normal (140,000-440,000) but at least they are stable and went up a little on their own.

I hope your Thanksgivings were wonderful and your Christmas and New Year are the best ever.

Things have been pretty much the same so I have not been diligent in writing in my blog. But the last couple of weeks, I have not felt well and have experienced a sharp pain in my chest in the area where the catheter ends. This pain radiates into the lower spine area and even makes my lower lip tingle. Sounds silly but that describes it. My nephrologist at dialysis, Dr. Shori, wanted me to go back to my cardiologist, Dr. Mott, to check my heart. I had not seen him since 2004 because of my other problems; he said they overshadowed everything else. I saw him Wednesday and he did an ekg and could tell there had been some changes since the last time but he was surprised there had not been more changes because of all that had taken place. I go in next Thursday for more testing but he said there would be very little he could do for me even if I came into his office having a heart attack because of my low platelet count and I would be too great a risk. I know that may seem a bit harsh but I appreciate doctors who are honest and straightforward with me. All he will be able to do is try medications. He has started me on Isosorbide to be taken on the days I do not have dialysis. Dr. Shori has started me on Nexium so we shall see if there is any change.

I went to Dr. Fenves, my nephrologist in Dallas, Tuesday and he was pretty impressed with most of my numbers other than the ferritin level. It is still at such a high level there is a great chance that it will start to damage my heart and liver.

Seems I am like a dog chasing their tail I just go round and round and things just keep going down hill. Thank goodness for my family and friends because they make all things bearable.

I had the Echocardiogram and have not received the official results but while I was having the test, the nurse/tech said it all looked good and clean. I know I have a murmur and a regurgitating valve and wanted to hear it. She said it is not the same that the doctors and nurses hear when they are listening to my chest but she turned on the sound and told me the sound I should hear. Sure enough, there was a small pop or click and she said the next sound was the murmur. She also told me the sound to listen for that was the valve closing too slowly and that is what allows some blood to leak back into my heart. Very interesting.

I had another Free Lite testing, the last one I had was in January and the numbers have made some movement. Free Kappa Lite Chains, S is 46.60 and it was 61.70 in January the Free Lambda Lite Chains, S is 61.90 and was 89.3 in January. Normal FKLC is 3.30-19.40 and FLLC normal is 5.71-26.30. My numbers are still high but at least the movement is in the right direction. I am still able to go about two weeks between packed red blood cell transfusions and it has been over a month since I have had a transfusion of platelets. My platelet number is staying around 13,000 – 15,000 and as long as they stay level, I will not have to receive a transfusion. As I have said normal platelet count is between 140,000 – 440,000. They feel mine will probably never rise above where they are now and as long as I do not have an accident or hemorrhage, I should be o.k.

Dialysis is still about the same but I can tell my energy level is not as good as it used to be. Rest is the best thing for me and that enables me to pretty much do what I need. I have made some choices and will be cutting back on activities that do not involve my family and friends. Those are the most important things to me and I want to keep my energy for my family and most especially for our wonderful grandsons. We have a great weekend planned after Thanksgiving for Arthur, Alan, Robert and me. I am looking forward to it as much as the grandkids. We will be at the Gaylord for the Lone Star Christmas and the presentation of Ice. Fun time with Arthur, the grandkids, beautiful hotel and great food for a weekend…who would not be looking forward to it.

Faces of Courage Award honors Weatherford cancer patient

It has been a while since I have written in my blog. Not much has changed but that can be a good thing. I am still taking the iron binder and at least my ferritin numbers are stable. They really have not come down but at least they are not still rising. I am hoping the numbers will begin to come down because they are dangerously high.

The September meeting of the Amyloidosis Support Group/Texas Area was Saturday, September 9th and the program was wonderful. Often we hear that people who have Alzheimer’s have amyloid, and this is frightening when one of my diseases is Amyloidosis. In the q & a period, a member asked if there is a stronger possibility of someone with Amyloidosis having Alzheimer’s. The answer was that these are two different types of amyloid. The definition of amyloid is pertaining to or resembling starch. It is a starchlike protein-carbohydrate complex that is deposited abnormally in some tissues during certain chronic disease states, such as amyloidosis, rheumatoid arthritis, tuberculosis and Alzheimer’s disease. So, there are many types of amyloid but this was good to hear because I have lost my mother, two aunts and an uncle to Alzheimer’s disease. This does not mean I will not get the disease but it does mean that my amyloid is a different type. I must be thankful for any good news that comes along.

I just went to a visitation for dear friends who lost their son and have another dear friend who lost a young grandson awhile back. I think a loss like that would be such a terrible mountain to climb. It makes my struggle seem so much less because the loss of a child must be so difficult.

I have friends who ask me what do I do all those hours when I am at dialysis and in the hospital. Mind over matter does help keep me sane. I keep occupied the hours I am required to take treatments by lots of means. The bag I carry everywhere is full of wonderful things to help pass the time away. I work crossword puzzles, work number puzzles, read, do my nails, talk on the cell phone; listen to my CD player with headphones, etc. Dialysis has individual TVs and that is good. Not much on but do keep up with Fox News, weather, a few garden shows and other how-to shows. When I am at the hospital and want to get up, I can walk around endoscopy. I just hook my tubing around "George" and he rolls around with me anywhere I go. Thank goodness because it would be bad if he did not and the tubing pulled my catheter out. It is sometimes overwhelming but I always remember there is a better time coming and each present situation is just temporary. Everyone I deal with is great and we have become like members of an extended family.

I celebrate small victories and one is I do not have to get blood or platelets tomorrow. My hemoglobin is 10.5 and my platelets are 15,000. The blood number is really pretty good considering it has been two weeks since I received a transfusion. The platelets are low, should be between 140,000 and 440,000 but 15,000 is pretty normal for me. Sandy said maybe next week but I said I wanted to push it to a week after that and she agreed to let me push it. I will enjoy sleeping past 4:00 in the morning and then taking my time and working in the yard until the temp runs me out.

The Blood Disorder Center/Texas Cancer Care has given me a very nice honor. They have chosen me to be honored as a Face of Courage. I thanked Dr. Page and told him I appreciated the honor and he said it was a unanimous decision and that I had been through so much and had done everything they had asked me to do, kept up my spirits, helped others through bad times and dealt with what ever has been sent my way. I must say I am honored by his comments.

Things had been going along without much changing. This weekend certainly was a change. I had not felt well on Friday and knew I was experiencing stomach problems and blockage. Saturday was getting worse but I worked outside in the gardens until about noon and came in because of the heat and the fact that I had completed what I wanted to do. Then things started to go down hill pretty quickly. By approximately 3:00, we went to the emergency room at Campbell Hospital. I was vomiting and the blockage was becoming unbearable. They took blood and x-rays and the diagnosis was: colonic inertia, vomiting and thrombocytopenia. I was given shots to help curb the nausea and stomach pains and given medications to help with the blockage. Before I left the hospital, I had already begun to heave but the nurse said I needed to keep it down…right easy for her to say. I lost everything on the way home and received no relief. About two hours later, we were on our way back to the hospital.

This time they used the tests from earlier in the day but also did a CAT Scan. The diagnosis this time was: constipation, thrombocytopenia and abdominal pain. They gave me the relief I needed this time and we arrived home about 2:00 on Sunday morning. Yesterday was not the greatest day because I was so very weak and unable to eat but they had also cautioned me that I was dehydrated and needed to be careful. Today is better. Went to dialysis and everything was ok there. Not the weekend I had hoped for but feeling much better now.

Not much has changed but I am able to skip every other week for blood testing and transfusions. I had made this decision because of my numbers and it seems to be working. I talked to Dr. Mary Skiba (Dr. Page was not in last week) and she agreed that it was ok to do this. It should help with my iron overload and it is so nice to have a week off from going in on Wednesday afternoon for testing then to the hospital on Thursday for the transfusions. Will continue this until my numbers indicate this is not a good idea.

The last time I saw Dr. Skiba, she asked me what keeps me going and what makes me get up and function each day? I told her it was because of my family, friends and just the fact I feel I have so many things to do that I am not ready to give up. An example of this is because of my grandsons. When school was in session in the spring, Robert was involved in a walk for cancer awareness and he told his dad, A. G., that he wanted to walk for Nonna, I was so very touched by this. Yesterday when Alan was here, he shared something with me that was so very sweet. When he was at camp last week, the fellow campers in his cabin were talking about what they would wish for if they had three wishes. Alan said he would wish for world peace, all who are hungry have food and the money they needed and that Nonna did not have the diseases she has and that she was well and healthy. Now aren’t those two of the most wonderful reasons to live for?

Went to the hospital yesterday and got "juiced-up" on blood and platelets. First unit of blood went great but when the second unit was administered, the butterfly connection came loose. Blood may be thicker than water but when it is gushing out of a tube, it is hard to tell. I said there is a problem and the nurse was still in the room and was able to take care of it pretty quickly. By then, I was soaked with blood on my right side. I had on an outer shirt and an inner shell top and the outside shirt was soaked as were my pants and pillowcase. The blood came off the pants fine but they had to wash the shirt and pillowcase. So this time, I did not get two full units of blood because I do not think it counts when it soaks your clothes. I was anxious to get home and take a bath and get clean clothes on because I could still smell the blood. Well as they say, it all came out in the wash.

The days I have dialysis have gotten to be more difficult for me to bounce back. I used to be able to function pretty well after an hour or two of rest but it has gotten to be longer. I have very little strength for the rest of the day but usually the next day is better. It is frustrating but nothing can be done about it so I just really enjoy my good days.

Really not much to tell just the same ole thing. I am getting platelets in the morning. Got blood last week and the hemoglobin was 9.9 so they are not giving me blood tomorrow. I am sure it is better to have the platelets and blood transfused on different days but it limits my time off from anything medical.

The dialysis has been most difficult this week with my blood pressure bottoming out. It took 30 minutes this morning before it came up enough for them to let me go. The top number has to be 100 or more before I can leave the center and at one time mine was 68/48. It finally registered 100/54 and they let me go. I just came home and rested until I could get my land legs. Susan, the lady who works for me, was here today when I got home and she is great. She always makes sure I am comfortable and have something to drink. I am fine this afternoon if I sit or lie down but if I stand or try to walk, I become very dizzy and do not make it very far.

Last week was very difficult but this week is much better. It remains an up and down ride but when I feel good, it is great. A. G. told me when I say I feel good is like most people’s worst day but really there are days when I almost feel normal. I am very thankful for those days and can really get a lot of things done and enjoy that time.

I have reordered the Exjade, the iron binder, because it seems to be doing some good by bringing my ferritin level down. Other than that, everything is about the same so there is not much to tell but just letting you know things are pretty level at this time.

The infection has been taken care of because Levaquin is like a miracle drug for me and has brought me through several struggles. The bleeding has also stopped and I am back to normal, well normal for me. I am still taking the iron binder Exjade and hope it is having a good effect on me. Blood was taken last week and is being checked to see what the iron numbers are and I should have those results on Monday.

Things are pretty stable at this time.

I have developed a bladder infection. It has been coming on for a while but I hated to give into it until I had no choice because of the bleeding. They now have me on Levaquin and I am sure that will take care of it. They told me if the bleeding persisted, I was to come back in for more testing. They think it is because of my low platelet count and with the infection, it is compounding the problem. My platelets were 9 but my hemoglobin was 10.6 so I was pleased with that. I will get platelets in the morning and hope that will help the situation. Dr. Page has ordered 6 units of platelets and I have never taken less than 10 so the hospital called him when I was there for cross typing. He said he wanted the 6 and it seems he is going to change up the amounts I receive to try and make my body accept it all better. Kind of like trying to fool my system with different amounts so it will not be as likely to reject the transfusions and create antibodies against them.

It seems like my body tries to think up things for me to deal with but I have great doctors who continue to help me.

Not much is happening that is different. I have been taking the Exjade (iron binder) for about 2 ½ weeks and the latest report is that the iron saturation is down from 77 in March to 49, the last time it was taken. This is encouraging but I will not know the real numbers until my ferritin is monitored and they only do that quarterly. I will be anxious to see what it is at that time.

The dialysis center is kept quite cool and we all bundle up in blankets to stay warm. It is not cold to the workers but when you are sitting there, it seems too cool. Another thing that makes the patients cooler is the fact that our blood is cooled down when it goes through the machine and before it is returned to our systems. The blood is kept around 36.5 to 37.0 but can go as low as 35. If it goes over 37, the cells are too warm and begin to breakdown and will let potassium leak into the blood system. It is quite a science and I continue to question and learn about the process.

A good thing took place this last week; I did not have to go in for transfusions. This is two weeks in a row because the week before, I just did not go in for testing. Sometimes it helps to be a little aggressive and just do what you really want to do. This is not a good idea to do often but sometimes it feels pretty good. I did go in Wednesday and my hemoglobin was 10.5 and the platelets were 13. These numbers are very low for a normal person but for me…they seem to be pretty normal. They said I did not have to have transfusions and will test again on next Wednesday. The Exjade, the iron binder, continues to make me a little sick at my stomach but maybe it will just take awhile for my system to adjust to it.

I received the Exjade, the iron binder, yesterday by special delivery. They look like large Tums and must be dissolved in orange juice, apple juice or water. It takes a long time to dissolve but has very little taste. It actually makes the juice taste a little creamy. I take two tablets one time a day so it is quite easy to deal with. I am anxious to see my ferritin numbers come down, 2565 is extremely high for iron. The dosage made me a little sick at my stomach so I think I will take them just before bed and I think this will take care of that problem.

Tuesday, April 4, 2006
6:30 am cdt

I received platelets yesterday because they had dropped to 9 but I did not get blood because my hemoglobin was 12.7, highest it has been in a very long time.

The wheels are grinding toward getting the medication I need, Exjade, for my iron overload. Dr. Page’s office has done the paperwork and it is in the hands of the pharmaceutical company. They are working to have my insurance company accept the prescription. A company rep called today and said they were working on it and should know in a week and would contact me.

I must say I always thought Popeye got extra strength from the iron in spinach. Excessive iron has not given me that boost in energy and I am very tired most of the time. I have great difficulty sleeping but that is not really a new thing because I had problems with this for a long period of time. Many nights consist of three or four hours of sleep but I do have to rest during the day because of the fatigue. Often I take advantage of the “down time” during dialysis and while in Endoscopy at the hospital for transfusions. So, I guess I get catnaps during the day.

I keep hoping I will be able to post good news but that does not seem to be the norm for me. I got my numbers from the dialysis center and the news was not good. They take blood for simple testing each Wednesday but once a month they do a complete workup for a better picture of what is going on with each patient. The numbers included my ferritin numbers (iron) and they are very high.

When I was at Dr. Fenves’ office earlier this month, he mentioned that my iron numbers need to be closely monitored because when you are given so much blood over a period of time, the iron collects and is not eliminated in amounts that are needed. During my appointment with Dr. Page yesterday, he mentioned the high ferritin numbers (iron). My numbers are 2,565 and normal is 10-291 and my ferritin sat (calc) is 77% and normal is 20%-55%. Ferritin is an iron compound formed in the intestine and stored in the liver, spleen and bone marrow for eventual incorporation into hemoglobin. I am not able to eliminate the excess amount and this will lead to problems with my heart and liver. My liver has been fine so far but this could change because of the excess iron. My heart is not in the best of shape and this will put more stress on it. Until now, there has been nothing that can be done for this situation but a new drug has been approved and has been on the market for only a few months. Dr. Page wants me to check with my nephrologist to see if a dialysis patient can tolerate it. He has checked and thinks it can be given to me. It is very expensive and (if I can take it) we will have to get approval from our insurance company. I cannot complain about our insurance company because they have been so very wonderful in assuring that I get the best of care. The drug is called Exjade and I will check on it with the nephrologist at the dialysis center tomorrow.

Dr. Page and I have talked about the fact that eventually my body will receive little or no benefit from the blood and platelet transfusions. I asked him what would be done at that point because I want to have the information when that time comes. He said I will continue to receive the transfusions and an example of what will happen will be that my count would be 8. and after transfusion it would only go to 8.5. But at this time, there is nothing else to be done for me. When it gets to that point, they will still continue to transfuse until the end. I have been asked what that time frame is and no one knows. My situation is so unique that every day is a learning experience for my doctors and for me. We just take it a day at a time and hope for the best. Thank you for your support and I hope this blog can be of help to someone when they are facing tremendous odds. Even in the darkest of times, there are good things that happen to each of us. I have many things to be thankful for and continue to hope that what they find from my situation will help others.

Well off to the hospital for two units of blood. My hemoglobin was 9.9 yesterday and my nephrologist wants it to stay above 10…almost made it. My platelets are 12 and that is very low but they are not going to transfuse me with platelets this week.

The headaches are gone and I did not go to the doctor about them. I got to feeling better and decided not to rock-the-boat. If they occur again, I will go then and be tested to see what it might be. I am hoping it was just one of those things that occasionally happens to everyone and there is really no real problem.

Dr. Shorie, the nephrologist at the dialysis center, made rounds on Monday and talked to me about the itching that I experience. He said it is usually a sign that the body is building antibodies against the blood and platelets that are received over a long period of time. Dr. Page had told me this and there is nothing that can be done about it. Dr. Shorie has upped the Epogen injections to 50,000 units at each dialysis session to try and make the red blood cells more active and help with my fatigue. It had been at 45,000 units, which was considered very high, but now the amount is higher. I said I thought the 45,000 units was the max and they said the 50,000 is very, very high but he wanted to try and see if the higher number would be of any help. He now wants the hemoglobin to remain above 10.0 because even the 9.0 he has suggested a couple of weeks ago is not high enough to keep my heart from working so very hard.

My hemoglobin was 10.7 and my platelets were 17,000 and I did not have to have transfusions this week. Enjoyed that fact because it is nice to have a day once in awhile that does not involve anything medical.

Dialysis has been about the same and I had blood and platelets on Thursday. Never one to enjoy the status quo, the new thing has been a dreadful headache located on the right side of my head. Take your hand with your fingers spread out and place it over your right ear then think of an imaginary line on the top of your head, this is the area that is affected. I do not think it is a sinus headache because I have had those and it does not feel the same. The left side does not hurt nor does the back of my neck. It is a dull ache but about every 30 seconds a sharp shooting pain goes through that side. It makes me blink and sometimes give off a quite almost silent moan. It is hard not to fear the worse but I am hoping it is an inner ear infection or something simple. It has been a problem since last Wednesday but got worse Thursday evening and I planned to go to my primary care doctor, David Reeve, Friday after dialysis but it went away. It returned on Friday evening, always before the weekend, and has continued so I will go to Dr. Reeve on Monday.

I went to my Dallas nephrologist, Dr. Fenves, last week for an appointment and did get some good news. He is impressed with the way my catheter has preformed. He feels since it has been in for a year that it will perform well for some time to come. He feels with the care the dialysis center has given it and with me keeping it so very clean, the chances of infection are remote. He realizes it must keep performing because of the danger of having to install another one could present problems because of my low platelet count. Even minor surgeries would be major problems for me because of my blood not having the capacity to coagulate. He also does not want to give up on my stem cells and says they could still begin to work. He is so very kind and calls me his miracle lady and always brings an associate into the room for my visits. He tells them of my initial disease (the Waldenstrom) and how very rare it is then on top of that, I have another rare disease (Amyloidosis) and how extremely rare it is to have both. It does not bother me because I keep hoping that one of these young doctors may be the one who finds the reason and cure for my maladies.

My blood pressure bottomed-out again yesterday. I felt fine until I stood for my standing blood pressure count and I became very dizzy and the count was 58/38. I had to wait for a while but the numbers did not come back to a level that they would allow me to drive home. Arthur picked me up and after an hour or two, I felt better.

My phosphorus count is very high and that has contributed to my itching. I was taking one phosphorus binder a day but they have increased it to two per meal. When your phosphorus gets too high, it leaches out of your bones and into your blood stream and this causes itching.

Thursday, February 23, 2006
4:11 am cst

Dialysis went well today.

I went in for my lab work and my hemoglobin was 11.1 (great) and my platelets were 19,000 (good for me). Today was my appointment to see my oncologist, Dr. Page. I asked him to decipher the results of the Free Kappa & Lambda Lt. Chain Assay I had in January. He explained it very well and the bottom line is it does not show amyloid deposits in my blood and shows no evidence of Multiple Myeloma and both of those findings are very good. These tests are relatively new and I am glad to have the test as part of my records.

I asked Dr. Page if anyone ever has stem cells that do not develop and he said it was a possibility. He feels we have gotten a minimal response from the stem cells and that will probably be all we get because he said with me being a year out from the transplant, he does not feel they are going to respond any better. He has told me before that each time I get blood and platelets (over a long period of time) they do me less and less good. I asked him if my stem cells were not going to work, when would we know that and what then? He said the platelets will be the best gage and when they are between five and ten and a transplant does not move that number then we will know. I asked him what then, would I continue to get transfusions? He said yes but we will deal with that when it happens. At this time, they have nothing else to offer.

The last two times I have received transfusions have resulted in me itching all over at dialysis the next day. I asked Dr. Page if this was just a coincidence and he said it was more likely that my system is building antibodies against receiving so many transfusions. As I receive more of each, my body will fight the intruder with antibodies. It is just my body trying to control the situation and it is unable to do so. It is trying its best but my maladies are just too strong for it to deal with. Too much being thrown at it over these last six years.

Dialysis went well today.

I went in for my lab work and my hemoglobin was 11.1 (great) and my platelets were 19,000 (good for me). Today was my appointment to see my oncologist, Dr. Page. I asked him to decipher the results of the Free Kappa & Lambda Lt. Chain Assay I had in January. He explained it very well and the bottom line is it does not show amyloid deposits in my blood and shows no evidence of Multiple Myeloma and both of those findings are very good. These tests are relatively new and I am glad to have the test as part of my records.

I asked Dr. Page if anyone ever has stem cells that do not develop and he said it was a possibility. He feels we have gotten a minimal response from the stem cells and that will probably be all we get because he said with me being a year out from the transplant, he does not feel they are going to respond any better. He has told me before that each time I get blood and platelets (over a long period of time) they do me less and less good. I asked him if my stem cells were not going to work, when would we know that and what then? He said the platelets will be the best gage and when they are between five and ten and a transplant does not move that number then we will know. I asked him what then, would I continue to get transfusions? He said yes but we will deal with that when it happens. At this time, they have nothing else to offer.

The last two times I have received transfusions have resulted in me itching all over at dialysis the next day. I asked Dr. Page if this was just a coincidence and he said it was more likely that my system is building antibodies against receiving so many transplants. As I receive more of each, my body will fight the intruder with antibodies. It is just my body trying to control the situation and it is unable to do so. It is trying its best but my maladies are just too strong for it to deal with. Too much being thrown at it over these last six years.

OK so much for “not so bad” numbers. I went in Wednesday after dialysis to have blood taken and see what was happening. The platelets were 7 and that is the lowest they have ever been. The hemoglobin was 8.00 and I have been warned that it must stay at 9.0 or above and the white blood cell count was 2.2 even though I had given myself 4 shots of Neupogen. I am now giving myself 4 more shots to try and bring the wbc up. I went in today and received 2 units of packed red blood cells and 10 units of platelets.

I have long fingernails and tonight when I blew my nose (sorry, I know that is not what a lady talks about but you all have been through a lot with me) I accidentally scratched my nose. It bled and bled and I finally stopped it with extreme pressure. It is all right now and I certainly learned a lesson…be a bit more gentle. The whole time it was bleeding, I kept thinking to myself…oh, dear I just got that blood today.

So, obviously the stem cells are still just hanging around and not earning their keep.

At least dialysis was not quite as eventful yesterday as Monday. Made it almost to the end and the cramping started again in the legs, feet and hands. The physician’s

assistant was there and she, the head nurse and my tech discussed my situation. Starting tomorrow, they are keeping me on the machine for an extra 15 minutes. Instead of three hours, it will be three hours and 15 minutes. They feel the extra time will allow the machine to remove the toxins and fluids a bit slower and not put such a strain on my heart and system. Most of the people there are on for four hours but that can depend on your size. I am small and can be on for a shorter period of time but since my heart and blood pressure are reacting so violently, they want to try me on for another 15 minutes. If it will make things easier, I guess the extra time is worth it.

I must say I do get a great deal of things done while at dialysis. Many of the people just sleep but I cannot do that because I feel I am wasting my time if I do not accomplish something each day. Tomorrow I will complete my December and January time sheets for volunteer hours for Master Gardeners and then do my nails. Now I did not say I try to do anything that is earth shaking because remember I am limited to what I can do sitting in that chair. I read, do crossword puzzles, watch TV, listen to my CD player, do my grocery list, talk on my cell phone, plan what I will do after dialysis and anything else I can do under those restrictive conditions. Sometimes my plans are put on hold until I can gain my strength back from the dialysis but I always have my list ready.

Dialysis yesterday was a downer. I made it through just fine until the last few minutes. I started having leg cramps and then became very ill. The nausea was terrible, I started throwing up, and my blood pressure was on a roller coaster ride. I was taken of the machine and kept a wet towel on my face and neck. I could not sit up and for sure I could not stand. They gave me saline and when this did not help, they gave me a shot of a medicine that was to help with the nausea. These are given to me through the line that they use for the dialysis. The nausea did not respond and I continued to feel very weak and extremely ill. I did not know it but I passed out for a few seconds and was told this when they said the doctor wanted me to go to the hospital by way of ambulance. I told them I felt I could go home but they said “NOT” because I had fainted and was still having multiple problems.

They called 911 and soon the ambulance arrived. My dialysis center is located only a few blocks from the hospital but I must admit it seemed like forever. I became extremely ill and threw up again. We arrived at the hospital and after checking in and talking to the doctor who was at the emergency room, I had an X-ray, EKG and other tests. Everything was really o.k. and the conclusion was that too much fluid was taken off in too short of time. They are talking about having me on the machines for a longer period of time. Instead of the three hours, maybe it will be increased to 3 ½ or 4 hours. This will put much less stress on my heart and system. I will find out tomorrow at dialysis. I rested the rest of yesterday and feel better today.

Some good news that I received while at the hospital was that my numbers are not bad. My hemoglobin was 9.8 and my platelets are 27,000. This is pretty exciting since I have not had a transfusion in a week. I hope this trend continues. It will be year February 22 since I received my stem cells back and maybe they are gearing up to give me a birthday surprise. I now have two birthdays: one my actual birthday and the day I received my stem cells back. M. D. Anderson considers these both “official” birthdays.

Yesterday at dialysis was the first time my fingers started to draw like my toes and feet have done. Kind of a funny feeling to have your extremities decide to go in directions of their own choosing. They really do not contort but just draw because of the fluids that are being taken from my body.

My blood pressure fluctuated greatly yesterday at dialysis. It was measured at one time at 79/58 then went to 197/108. It settled down to an acceptable rate before I left. They asked me to come back for another count that afternoon but I had meetings and said it would not be possible. I asked them if I got a home unit and checked it myself would that be acceptable. They said yes and to keep an eye on it daily. It is not uncommon for me to become very dizzy and lightheaded when I get up or exert myself. I purchased a “deluxe” model but it is very easy to use so I guess I am set. They asked me to bring it with me Monday to calibrate it with theirs. I am going to ask them…now what? I can see what my blood pressure is so what should I do and when should I do it. Is just sitting or lying down sufficient? In reality, I could have done that without a monitor but I guess it is good to have “a new toy” once in awhile.

We had a wonderful weekend as a family and it was a great time with the best family around.

After dialysis, Dr. Shorie made his visit for this week. The first thing he asked me was when I was going to get blood. I told him I was to go in this afternoon for testing and was sure they would order it for tomorrow. I wanted to wait until Wednesday because of prior commitments tomorrow but he said absolutely not. He has written orders that I have taken to my oncologist stating that I am to receive transfusions when my hemoglobin drops below 9 and it is to remain at 9 or above. He said people with dialysis also have heart involvement and when the hemoglobin drops too low, the heart is made to work overtime to compensate. Another words, it is trying to do its job but it cannot and it just wears itself out trying. He said when my hemoglobin drops then I am a walking candidate for heart failure. When it was tested today, it was 7.4 and the platelets are 13. I am to go into the hospital at 8:00 in the morning for transfusions. When you are on dialysis, you are a different breed.

I know after the transfusions, I will feel better and have more pep.

I also received the results of my Free Kappa Light Chain and Free Lambda Light Chain with Kappa/Lambda ratio. I know this is something new I am throwing out to you and will study more about the results and report it in terms we all can understand. Sometimes it takes me awhile to understand it well enough to share the information.

Yesterday was my one-year anniversary on the start of this journey. We left for Houston on the 19th of January 2005. I am not sure I would have gone through with it had I known what was ahead. Then on the other hand, I might not be here had I not had the Stem Cell Transplant. Dr. Anderlini said I would walk through hell and he was right. I know they have done everything they could for me and are at a loss of what to do to make the stem cells start working.

I have not had a transfusion since Tuesday before Christmas and my numbers have been holding: hemoglobin 8.5 and platelets 16,000. When I went in for testing on Wednesday, my numbers had not changed and I was quite surprised because I feel pretty tough. I am weak, my breathing is labored and my heart is laboring more than it should. When it is like this, I can hear the pounding in my ears and at times I can hear “cricket sounds” and become dizzy when I stand-up.

When I was at dialysis this morning, I was told that my hemoglobin was 7.7. It was taken on the same day the other lab did the test so there is quite a difference. The way I feel makes me think the 7.7 is closer to the correct number.

We are going for our youngest grandson’s first communion on Sunday so this weekend will be a busy and wonderful one for us. We will go to Comanche where our son is an Episcopal priest at St. Matthews and Trinity in Dublin. It will be a special time for an uncle to give his nephew his first communion. Robert lives in Flower Mound but will be at Comanche for this event.

I will go in for testing again on Monday and will be anxious to see what the results are on that day. Thank you for traveling this road with me this past year. Your support, prayers and best wishes have made it much smoother for Arthur and me.

Almost a month since I have written in my blog and not much has changed other than I know I have less energy and seem to be weaker and weaker. Still able to do much that I want to but have to rest more often. That is hard to do and makes me unhappy with myself but I have no other choice.
The last time I was checked my platelets were lower than they had ever been (8,000) but my hemoglobin had not dropped below 8.2. That is low but mine has been much lower. Transfusions got me through Christmas and New Year’s and had great holidays. Will go back Monday to be checked again and am sure there will be a need for transfusions but will not be able to have them until Wednesday because Tuesday is full of meetings and other things.

If you are not familiar with dialysis, I will try to describe about it in some of the postings. It is very hard on the body especially the heart because it makes a great deal of demands on the heart each session. My blood pressure will fluctuate dramatically. It has gone from 210/97 at the highest to 57//34 at the lowest and those are dangerous extremes and shows why it is so hard on the heart. I also have painful muscle spasms during dialysis but they have begun to last after the treatments. They are uncontrollable and if they did not hurt so badly, it might be funny to see the toes and feet draw and turn under in ways that I cannot do on my own. It is like they have a mind of their own. Then the leg spasms are like “Charley-horses” and have become so bad that the only way to get them to stop is to stand and rub the muscles. When they become so bad at dialysis, they will turn off the machine for a period of time and give me saline until I can again go back on the machine and finish the treatment.

Best wishes to each of you for a wonderful 2006!