Today, I am 27 days post-transplant.
My prayers have finally been heard!
On Sunday, my white blood count was 800. On Monday, it jumped to 1200. On Tuesday, it jumped to 1900 and this morning, my white count was an amazing 2800. Normal adults have a 4000 to 11,000 white cell count so I am getting close to the normal low level.
I am at the point where I can be discharged from the hospital and my doctor has me set to be discharged from the hospital this Friday (Jan. 16th). I am so happy since my white cells had been hovering between 600 and 900 for 2 weeks. Finally we have some progress!
Yesterday, I received the results of my HLA (human leukocyte antigen) test (DNA tissue typing) to see who is taking my body over: Ben from Belgium or Mickey from Australia.
And the winner is Ben from Belgium. Mickey's DNA was not shown anywhere in my blood test. Mickey has died and we need to say a quick prayer for him and thank him for trying his best.
It seems Ben from Belgium was the stronger cord blood. Ben's cord blood was actually collected from birth in October 1996, so he has been frozen for 12 years and was stronger than Mickey who's cord blood was collected last year. Ben's cord blood size was also bigger than Mickey's at 3.23 million cells vs. 2.5 million cells. Ben's cells were given to me first and sometimes the doctors see this as the cells that get a head start and win.
The following is the summary of the 7 DNA tissue typing numbers that show the engraftment analysis between Ben from Belgium and myself. Note that there is no DNA in me from Mickey of Australia. This test is from 21 days post-transplant.
CD19 - 73% Ben / 27% me
CD8 - 98% Ben / 2% me
CD4 - 100% Ben / 0% me
CD3 - 100% Ben / 0% me
CD14 - 97% Ben / 3% me
CD15 - 82% Ben / 18% me
PB - 91% Ben / 9% me
By 100 days post-transplant, all of these DNA numbers will be 100% of Ben. My doctor is now jokingly calling me "Ben" every morning when she sees me. My rashes have spread throughout my body but now they are subsiding since I think the war between Ben and Mickey is over inside my body.
Yesterday, I received one unit of platelets and today, I received one unit of 0+ blood. It looks like my Ben cells are starting to make red cells (it's been a week since I had a blood infusion) but it looks like Ben is not yet making platelets (which take longer to start making) since I am still getting a bag of platelets every 2 to 3 days. Hopefully my red cell and platelet production starts to kick in good like the white cells did.
So far I will be released from the hospital on Friday (2 days) and will still have to return to the outpatient lab every 2 days for a blood test to see if my red cells and platelets levels are acceptable and receive an infusion if not. Hopefully as the red cells and platelets begin to develop, I will be coming to the lab less often. I will be sent home from the hospital with several medications plus I will have to continue an IV (anti-fungal) medication for at least a week. Luckily, I have my Hickman catheter in my chest and it is just a quick connection to set me up with an IV feed. No needles for me!
I will yell if more information comes up. Again, thank you for all who have donated your blood and platelets at the City of Hope for me. May your unselfish generosity be returned to you and your family a hundred fold!
Wednesday, January 14, 2009
Monday, January 12, 2009
White Cells at 1200
Today, I woke up to some good news. My white cells went up from 900 yesterday to 1200 which is the highest I have been yet. I still have to get to 2000-2500 to get discharged from the hospital but at least we are going in the right direction.
I also have rashes on my body from the waste up and last night, I started a burning rash on my calves. The rashes are a good sign meaning that the baby stem cells are working hard inside my body. The bad thing is that the doctor has to increase my steroid use (prednisone) from 10 mg twice per day to 15 mg twice per day. The steroids are needed to reduce the inflammation and prevent the rashes to developing into pneumonia or liver problems. So I have to accept my steroids even though I have bone hip damage from too many steroids 2 years ago. These are also the muscle melting steroids and not the muscle building steroids. The steroids also keep me a little hyper and do not let me sleep well at night (I am awake at 3 am).
For now, let's just work on getting those white cells up!
I also have rashes on my body from the waste up and last night, I started a burning rash on my calves. The rashes are a good sign meaning that the baby stem cells are working hard inside my body. The bad thing is that the doctor has to increase my steroid use (prednisone) from 10 mg twice per day to 15 mg twice per day. The steroids are needed to reduce the inflammation and prevent the rashes to developing into pneumonia or liver problems. So I have to accept my steroids even though I have bone hip damage from too many steroids 2 years ago. These are also the muscle melting steroids and not the muscle building steroids. The steroids also keep me a little hyper and do not let me sleep well at night (I am awake at 3 am).
For now, let's just work on getting those white cells up!
Wednesday, January 7, 2009
Engraftment Starts!
I have now been in the hospital for 4 weeks. One week after my transplantion, on Christmas Day, my baby stem cells started growing. My white cell count had gone from nothing to 500 and then two days later, the white cells were at 1000. For the next 10 days, my white count has been hovering around 600 to 700.
The doctor thinks the two baby cord stem cells are fighting each other to see who will win the overall fight. I have had rashes on my arms, neck and chest which shows that something is going on inside of me. Supposedly, this is all normal and it takes longer for the baby stem cells to figure out what they are supposed to do. I have been in room isolation for 1 week until my white count gets above 1000. I need to get the stem cells to over 2000 to be able to leave the hospital. Normal levels for white cells are 4000 to 11,000.
My body is currently not making the correct amount blood products (red cells and platelets) until the baby stem cells get to work and make bone marrow which makes blood products. Todate, I have received 5 units of blood and 5 units of platelets. When my hemoglobin blood level falls below 8.5, I receive a unit of blood (normal levels are 13 to 18). When my platelet levels fall below 20, I receive a unit of platelets (normal levels are 150 to 350). When your platelet level is less than 20 there is a serious concern about internal bleeding since you do not have any platelets (glue) in your blood stream. I have to be careful about bumping into things and possibly having internal bleeding.
On December 30, I had a scare when I tossed my gown into the garbage receptical and the steel cover of the receptical fell hard onto my wrist and immediately caused blood to swell up in my wrist. I thought, oh no, I have survived being a cancer patient for 3 1/2 years and I am going to end it here now, death by steel lid! Luckily, the nurse grabbed an ice pack and ordered another unit of platelets. Luckily, I had just received a unit of platelets the prior day when I was at 17 but today, I was at 38 (above the dangerous below 20 level). The charge nurse had to come to my room to document the accident and my doctor came flying in saying, "What the hell are trying to do? Do I need to tie you down to the bed to keep you from killing yourself?" So far, my blood puddle on my wrist has healed and I am left with just a nice looking black and blue bruise.
Two weeks ago, when my white cells were down to zero, I started to get a fever which is the body's only way to fight infection when the immune system is down. Since I had a fever, they had to give me a slew of antibiotics to help the body fight since I had no immune system. The antibiotics are very strong and they are not very friendly to my digestive system. I could not keep even a sip of water down before I was tossing my cookies. Since I was not eating, they hooked me up to 24 hour TPN which is a huge IV bag of solution with all the vitamins and mineral, fat, sugar and so on that you need to live. I did not eat for about 4 days and then I started a clear liquid diet (popsicles, broth and gelatin) and then a soft food diet. I had major bloating in my stomach (3 to 4 months pregnant) and they did an abdominal ultrasound to see what was going on inside. They found out that my intestines were so swelled up from the chemo and radiation that I had a blocked intestine. I was put on 70 mg of prednisone (steroid) to help with the inflammation and my two anti-rejection drugs that allow the baby stem cells to grow in my body were changed since they may have been contributing to the intestinal swelling.
On top of all this, I was shivering at times constantly due to the fevers so they gave me a shot of demoral to calm the constant shivers. The demoral instantly stopped the shivers but it also started to drop my blood pressure which is normally 110 over 70 to 70 over 35 (dangerous levels). Then they had to give me other medications to help bring the blood pressure up. The low blood pressure problem lasted for 2 days. My wife stayed in the hospital with me overnight to help keep on eye on me.
Today, I am doing good. The fevers, inflammation, low blood pressure are gone. I am only getting TPN (nutrition bag at night for a few hours) and I am back on the normal, low bacteria diet (no fresh veggies or fruit, all has to be cooked).
Tomorrow, the doctor is going to run a DNA tissue typing blood test to see what's up with the new stem cells. The tissue typing test should show my original 10 tissue typing numbers plus a percentage of each of the two cord blood units. They say after 100 days, one of the cords will take over the body and my DNA tissue typing numbers will change to the numbers of the winning cord. Will I be Belgium or will I be Australian? We will have to wait and see.
I would like to thank all of my blood and platelet donors who have come to the City of Hope at a moments notice to give life to me. As I said, I have received 5 bags of blood and platelets and they have all been directed donations which means I have been receiving all of these donations. Thank you again for those who have donated and are keeping me alive.
I will blog as more news comes up!
The doctor thinks the two baby cord stem cells are fighting each other to see who will win the overall fight. I have had rashes on my arms, neck and chest which shows that something is going on inside of me. Supposedly, this is all normal and it takes longer for the baby stem cells to figure out what they are supposed to do. I have been in room isolation for 1 week until my white count gets above 1000. I need to get the stem cells to over 2000 to be able to leave the hospital. Normal levels for white cells are 4000 to 11,000.
My body is currently not making the correct amount blood products (red cells and platelets) until the baby stem cells get to work and make bone marrow which makes blood products. Todate, I have received 5 units of blood and 5 units of platelets. When my hemoglobin blood level falls below 8.5, I receive a unit of blood (normal levels are 13 to 18). When my platelet levels fall below 20, I receive a unit of platelets (normal levels are 150 to 350). When your platelet level is less than 20 there is a serious concern about internal bleeding since you do not have any platelets (glue) in your blood stream. I have to be careful about bumping into things and possibly having internal bleeding.
On December 30, I had a scare when I tossed my gown into the garbage receptical and the steel cover of the receptical fell hard onto my wrist and immediately caused blood to swell up in my wrist. I thought, oh no, I have survived being a cancer patient for 3 1/2 years and I am going to end it here now, death by steel lid! Luckily, the nurse grabbed an ice pack and ordered another unit of platelets. Luckily, I had just received a unit of platelets the prior day when I was at 17 but today, I was at 38 (above the dangerous below 20 level). The charge nurse had to come to my room to document the accident and my doctor came flying in saying, "What the hell are trying to do? Do I need to tie you down to the bed to keep you from killing yourself?" So far, my blood puddle on my wrist has healed and I am left with just a nice looking black and blue bruise.
Two weeks ago, when my white cells were down to zero, I started to get a fever which is the body's only way to fight infection when the immune system is down. Since I had a fever, they had to give me a slew of antibiotics to help the body fight since I had no immune system. The antibiotics are very strong and they are not very friendly to my digestive system. I could not keep even a sip of water down before I was tossing my cookies. Since I was not eating, they hooked me up to 24 hour TPN which is a huge IV bag of solution with all the vitamins and mineral, fat, sugar and so on that you need to live. I did not eat for about 4 days and then I started a clear liquid diet (popsicles, broth and gelatin) and then a soft food diet. I had major bloating in my stomach (3 to 4 months pregnant) and they did an abdominal ultrasound to see what was going on inside. They found out that my intestines were so swelled up from the chemo and radiation that I had a blocked intestine. I was put on 70 mg of prednisone (steroid) to help with the inflammation and my two anti-rejection drugs that allow the baby stem cells to grow in my body were changed since they may have been contributing to the intestinal swelling.
On top of all this, I was shivering at times constantly due to the fevers so they gave me a shot of demoral to calm the constant shivers. The demoral instantly stopped the shivers but it also started to drop my blood pressure which is normally 110 over 70 to 70 over 35 (dangerous levels). Then they had to give me other medications to help bring the blood pressure up. The low blood pressure problem lasted for 2 days. My wife stayed in the hospital with me overnight to help keep on eye on me.
Today, I am doing good. The fevers, inflammation, low blood pressure are gone. I am only getting TPN (nutrition bag at night for a few hours) and I am back on the normal, low bacteria diet (no fresh veggies or fruit, all has to be cooked).
Tomorrow, the doctor is going to run a DNA tissue typing blood test to see what's up with the new stem cells. The tissue typing test should show my original 10 tissue typing numbers plus a percentage of each of the two cord blood units. They say after 100 days, one of the cords will take over the body and my DNA tissue typing numbers will change to the numbers of the winning cord. Will I be Belgium or will I be Australian? We will have to wait and see.
I would like to thank all of my blood and platelet donors who have come to the City of Hope at a moments notice to give life to me. As I said, I have received 5 bags of blood and platelets and they have all been directed donations which means I have been receiving all of these donations. Thank you again for those who have donated and are keeping me alive.
I will blog as more news comes up!
Thursday, January 1, 2009
Photos
A photo of my lovely Suegra (mother-in-law). She is a very good nurse.
My sweet, 89 year old Abuelita (grandmother) came with her walker to see me.
A group of Carolers were singing outside my room.
My cute kids (Jacqueline-16 and Matthew 13) came to check on me.
These are my cord blood boys. Ben from Belgium is on the left and Mickey from Australia is on the right. These boys are going to cure my cancer forever!
THE BOYS
My beautiful wife Elaine brought presents for Christmas.
My kiddies.
Elaine and I. My long flowing hair finally fell out again.
My bag of TPN (total nutrition bag). When I stopped eating due to nausea the doctor ordered me a daily bag of TPN which will sustain my body requirements (minerals, proteins, sugars, etc.) until my digestive system which has been beaten up with Chemo, Radiation, and antibiotics returns to normal.Thursday, December 25, 2008
Double Cord Transplant Day
Last Thursday (Dec. 18, 2008) at 3 pm was the start of my double cord transplant. First, the Belgium cord was infused into my body. The bag of 0+ looking blood had all of the stem cells from the Belgium cord. The Belgium cord did not have a test sample for the City of Hope to recheck the tissue typing of the cord so 5 hours earlier, the cryogenically cord was defrosted in the City of Hope lab and a small sample of the stem cells were tested. The bag of stem cells was also washed to remove any impurities (I have no idea how they do this). The Belgium cord tested perfect for me so then the infusion started at 3 pm. The stem cells were gravity fed into me over 1/2 hour. After the Belgium cord was infuses, the Australian cord blood was hung and infused into me.
Now it is a waiting game. My body's marrow has been killed off by the chemo and radiation and my body is not making any blood (white, red cell or platelets). We now have to wait until the baby stem cells make marrow and start making blood. This can take 12 to 20 days for the stem cells to start producing. I am hoping they start working in 7 days. I will donor infusions of blood and platelets until my baby stem cells start producing. I am also getting tons of antibiotics since my white count is near zero (no immune system). A cold could be very bad for me.
We just wait now!
Belgium Cord blood bag. The Belgium cord is 0+ type blood. I am B+.
The cord blood going into me through my hickman catheter.
The Australian cord blood bag (B+) was darker and not as large since this bag did not need to be washed. This bag was more like blood (thicker and darker).
The finished bag of Australian cord blood.
The finished bag of Australian cord blood
Belgium cord blood bag
Belgium cord bag
Now it is a waiting game. My body's marrow has been killed off by the chemo and radiation and my body is not making any blood (white, red cell or platelets). We now have to wait until the baby stem cells make marrow and start making blood. This can take 12 to 20 days for the stem cells to start producing. I am hoping they start working in 7 days. I will donor infusions of blood and platelets until my baby stem cells start producing. I am also getting tons of antibiotics since my white count is near zero (no immune system). A cold could be very bad for me.
We just wait now!
Belgium Cord blood bag. The Belgium cord is 0+ type blood. I am B+.
The cord blood going into me through my hickman catheter.
The Australian cord blood bag (B+) was darker and not as large since this bag did not need to be washed. This bag was more like blood (thicker and darker).
The finished bag of Australian cord blood.
The finished bag of Australian cord blood
Belgium cord blood bag
Belgium cord bag
Saturday, December 20, 2008
Pictures
My father-in-law, Joe waiting to have me checked in for my Hickman surgery on December 3.
December 3 - I am in the pre-op room waiting to be taken into surgery to have my Hickman installed. The Hickman is a catheter inserted into my chest and into the superior vena cava vein and is used for all intravenous connections.
My beautiful wife, Elaine hanging out with me in my room. I am on the 6th (top) floor of the Helford City of Hope Hospital (Room 6115).
I have a great view to the west and can see downtown Los Angeles on clear days. I can also see colorful sunsets from my room.
My IV pole and me. This IV pole is connected to me 24/7 (except when I shower) through my hickman catheter in my chest.
Radiation Day
Wednesday was Radiation Day. They picked me up by wheelchair at 10 am and took me to the basement of the old hospital. The hospital has two linear accelerators that are used for total body irradiation (TBI). I was to get a single dose of 200 cGy (200 centigrays which is an amount of radiation absorbed into the body). The doctors told me that 200 cGy is not a lot of radiation but that this is the most that one would get at one sitting. Usually, patients receive 1500 cGy spread out over 150 cGy per session.
All I could say was the night before the radiation, I was having nightmares about Nagasaki and Hiroshima. I was thinking about the guy standing there and then the nuclear storm hits him, his eyes bulge out, his hair flies off his head, you see his skeleton and then it instantly turns into a pile of dust. Well enough of negative visualization. No World War II re-enactments.
For the radiation, I was to lay on first my right side for 20 minutes and then on my left side for 20 minutes. First they laid me down on the table and measured the distances of my head, throat, chest, stomach, knee and feet to the machine since they had calculated how far I must be to receive an even amount of radiation over my body. I was very surprised to see the technicians measuring me with a regular tape measure. Where are the laser measuring devices to make sure they are getting the correct distance. I am an engineer and I like precision measurements especially when it means possibly burning off my nose or ear. The technician informed me that exact measurements are not needed!
Next they taped small computer chips to several locations on my body (head, neck, chest, stomach, knee and foot) using standard masking tape. They said this was to measure the amount of radiation I would receive at each point and verify that I was getting an even dosage. I said that's cool that these chips are real-time and can tell you how much radiation I was getting as the machine was operating and they adjust the dosage strength as needed. The technician said that the measuring devices told them how much radiation I received after I was finished. So I guess if I happened to receive too much radiation on my knee, they just go "Oh well, I'll guess we'll try to do it better next time". I was not very happy with the archaic, 1950's looking technology that I was going to receive.
Finally, the technicians got me in the correct position on my right side and then they put at least 20 hospital blankets on top of me for protection. Using the masking tape, they taped a clear plexiglass sheet to the table covering my face to the machine. The plexiglass fell a few times before they put enough tape on it to hold it. Again, high tech operations.
The three technicians then ran out of the room and said that they can see me on the monitor in the next room and if I had any problems, to raise my hand. They put on some Santana music to help me relax. They bolted the door and then I said a prayer that I would survive this. A red light started blinking and the machine buzzed. I felt the hairs on my chest were moving or was it my skin burning off. I was not sure if I should have my eyes open since I was looking directly at the machine 6 ft away, so I kept my eyes shut and prayed and thought positive fun images I have experienced in my life. The Santana music playing helped since I knew it would be over in about 4 to 5 songs.
The technician counted down 15 minutes left, 10, 5 and 2 minutes left. Those last 2 minutes felt like 2 hours. My shoulder was hurting bad and I wanted to be able to move it. The buzzing finally stopped, the red light shut off, the door unlocked and the three technicians ran in to see if I was still alive. Luckily, I did not feel any different. They proceeded to move the monitoring devices taped to my hairy chest and stomach and gave me a nice waxing with the masking tape. I was turned over to my left side, the stack of hospital blankets was lowered on top of me. The three technicians ran out of the room like mice, locked the 6 inch thick steel and concrete door and the buzzing and red lights started up again. Santana was cranking in the background with some good bass (they must have a good speaker system). I did not feel anything this time (I guess I do not have any hair to buzz on my back) and just laid there and relaxed.
I thought 5 minutes had passed but the technician did not say anything. Then I for sure thought 10 minutes and then 15 minutes had passed but no word from the technician on the status of my stay. I knew it was raining very hard outside and we were in the basement. Maybe the basement had been flooded and everyone was evacuated or what if a group of heavily armed terrorists had overtaken the radiation department looking to steal some plutonium for their warhead. The radiation department was a ghost town but I was still laying here getting pumulted with radiation from this linear accelerator. It must be 20 minutes now! Why has no one told me how much time is left? Is there anyone out there? Am I all by myself? I started to scream help in my head. HELP! Would I be burned to a crisp, where is everyone? I thought about getting up and running for the door which was blocked from the radiation shower. Finally, the buzzing stopped, the red light shut off, the door unbolted and the three mice scurried in yelling, "You are all done!" I could not wait to get out of that room!
The only effect from the radiation was that my nose was very dry. I did not start heaving or feel sick to my stomach which my doctor told me was a possible side effect. Luckily for the rest of the day, I did not have any side effects. Thank God! I survived my radiation!
All I could say was the night before the radiation, I was having nightmares about Nagasaki and Hiroshima. I was thinking about the guy standing there and then the nuclear storm hits him, his eyes bulge out, his hair flies off his head, you see his skeleton and then it instantly turns into a pile of dust. Well enough of negative visualization. No World War II re-enactments.
For the radiation, I was to lay on first my right side for 20 minutes and then on my left side for 20 minutes. First they laid me down on the table and measured the distances of my head, throat, chest, stomach, knee and feet to the machine since they had calculated how far I must be to receive an even amount of radiation over my body. I was very surprised to see the technicians measuring me with a regular tape measure. Where are the laser measuring devices to make sure they are getting the correct distance. I am an engineer and I like precision measurements especially when it means possibly burning off my nose or ear. The technician informed me that exact measurements are not needed!
Next they taped small computer chips to several locations on my body (head, neck, chest, stomach, knee and foot) using standard masking tape. They said this was to measure the amount of radiation I would receive at each point and verify that I was getting an even dosage. I said that's cool that these chips are real-time and can tell you how much radiation I was getting as the machine was operating and they adjust the dosage strength as needed. The technician said that the measuring devices told them how much radiation I received after I was finished. So I guess if I happened to receive too much radiation on my knee, they just go "Oh well, I'll guess we'll try to do it better next time". I was not very happy with the archaic, 1950's looking technology that I was going to receive.
Finally, the technicians got me in the correct position on my right side and then they put at least 20 hospital blankets on top of me for protection. Using the masking tape, they taped a clear plexiglass sheet to the table covering my face to the machine. The plexiglass fell a few times before they put enough tape on it to hold it. Again, high tech operations.
The three technicians then ran out of the room and said that they can see me on the monitor in the next room and if I had any problems, to raise my hand. They put on some Santana music to help me relax. They bolted the door and then I said a prayer that I would survive this. A red light started blinking and the machine buzzed. I felt the hairs on my chest were moving or was it my skin burning off. I was not sure if I should have my eyes open since I was looking directly at the machine 6 ft away, so I kept my eyes shut and prayed and thought positive fun images I have experienced in my life. The Santana music playing helped since I knew it would be over in about 4 to 5 songs.
The technician counted down 15 minutes left, 10, 5 and 2 minutes left. Those last 2 minutes felt like 2 hours. My shoulder was hurting bad and I wanted to be able to move it. The buzzing finally stopped, the red light shut off, the door unlocked and the three technicians ran in to see if I was still alive. Luckily, I did not feel any different. They proceeded to move the monitoring devices taped to my hairy chest and stomach and gave me a nice waxing with the masking tape. I was turned over to my left side, the stack of hospital blankets was lowered on top of me. The three technicians ran out of the room like mice, locked the 6 inch thick steel and concrete door and the buzzing and red lights started up again. Santana was cranking in the background with some good bass (they must have a good speaker system). I did not feel anything this time (I guess I do not have any hair to buzz on my back) and just laid there and relaxed.
I thought 5 minutes had passed but the technician did not say anything. Then I for sure thought 10 minutes and then 15 minutes had passed but no word from the technician on the status of my stay. I knew it was raining very hard outside and we were in the basement. Maybe the basement had been flooded and everyone was evacuated or what if a group of heavily armed terrorists had overtaken the radiation department looking to steal some plutonium for their warhead. The radiation department was a ghost town but I was still laying here getting pumulted with radiation from this linear accelerator. It must be 20 minutes now! Why has no one told me how much time is left? Is there anyone out there? Am I all by myself? I started to scream help in my head. HELP! Would I be burned to a crisp, where is everyone? I thought about getting up and running for the door which was blocked from the radiation shower. Finally, the buzzing stopped, the red light shut off, the door unbolted and the three mice scurried in yelling, "You are all done!" I could not wait to get out of that room!
The only effect from the radiation was that my nose was very dry. I did not start heaving or feel sick to my stomach which my doctor told me was a possible side effect. Luckily for the rest of the day, I did not have any side effects. Thank God! I survived my radiation!
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