Sunday, July 31, 2011
July 2011 - Day +10
Here we are 10 days post transplant still waiting for them stem cells to their job. White blood counts jumped a tiny bit today. I received my first nuepogen shot today to try and get things moving along.
Hair is starting to fall out, I am going to have my head shaved today, I will post pictures later today or tomorrow. We have prepared the girls for this day, it will be interesting to see their reaction.
WBC - .17
ANC - 0
Hemoglobin - 8.9
Platelets - 14
Hair is starting to fall out, I am going to have my head shaved today, I will post pictures later today or tomorrow. We have prepared the girls for this day, it will be interesting to see their reaction.
WBC - .17
ANC - 0
Hemoglobin - 8.9
Platelets - 14
Saturday, July 30, 2011
July 2011 - Day +9
Did not sleep well last night, I guess a Friday pastime is to race motorcycles on the Eisenhower Expressway at speeds of excess 100 mph in the wee hours of the morning. The Eisenhower expressway is right out my window.
Felt a little fatigued today, could be from lack of sleep last night or that my hemoglobin is getting low or my body needs a lot of resources to start making new cells.
White blood counts were up slightly, tomorrow will be the true indicator if my stem cells have engrafted to the bone marrow. If the White blood cell count is up again tomorrow this would be a good indication.
Tomorrow I start getting Neupogen shots to try and give the bone marrow a push to get things going.
WBC - .11
Hemoglobin - 9.3
Platelets - 30
Felt a little fatigued today, could be from lack of sleep last night or that my hemoglobin is getting low or my body needs a lot of resources to start making new cells.
White blood counts were up slightly, tomorrow will be the true indicator if my stem cells have engrafted to the bone marrow. If the White blood cell count is up again tomorrow this would be a good indication.
Tomorrow I start getting Neupogen shots to try and give the bone marrow a push to get things going.
WBC - .11
Hemoglobin - 9.3
Platelets - 30
Friday, July 29, 2011
July 2011 - Day +8
My immune system is completely gone. I have to wear a mask and gloves when I leave my room, this protects me from any germs. When in my room I am protected by an advanced filtration system, visitors and myself do not need wear masks.
I woke up feeling pretty good today, even though the storms kept me awake some of the night.
Jane has decided to spend last night and tonight with me at the hospital. Our thoughts were I would be hitting rock bottom and start to feel some fatigue. This way she could monitor me and the nurses, to insure I was getting everything I need.
No hair loss yet, I am told that will occur in about 1 week from now, which is about 2 weeks from the high dose Chemo.
WBC - .08
Hemoglobin - 9.6
Platelets - 43
I woke up feeling pretty good today, even though the storms kept me awake some of the night.
Jane has decided to spend last night and tonight with me at the hospital. Our thoughts were I would be hitting rock bottom and start to feel some fatigue. This way she could monitor me and the nurses, to insure I was getting everything I need.
No hair loss yet, I am told that will occur in about 1 week from now, which is about 2 weeks from the high dose Chemo.
WBC - .08
Hemoglobin - 9.6
Platelets - 43
Thursday, July 28, 2011
July 2011 - Day +7
Well things are getting harder rather than easier, I seem to be spiraling down still. The nausea was the worst yesterday evening, I would have expected it to get better rather than worse, but I guess that is not the case. The nausea this morning is no better and I am waiting for some more anti-nausea medicine to be delivered.
Counts still dropping, waiting for those baby stem cells to setup shop and start being productive.
WBC - .13
Hemoglobin - 9.8
Platelets - 61
Interesting story about platelets. There are two types of stem cell transplants:
- Auto - Where one's own stem cells are used
- Allo - Where a donors stem cells are used.
My transplant is an Auto, but if for some reason Auto transplant does not work then next step would be to do an Allo transplant. With Allo transplants, the best chance of getting a donor is from a sibling. Here is were the possible issue comes in with platelets. Both of my sisters donated platelets and had them directed to me. I was talking to a nurse one evening and she stated if I received platelets from my sister, there would be a good chance if I ever needed an Allo transplant they could no longer be donors for that. I brought this up to the doctor and she had several discussions with other people and I guess there are two schools of thought. So to be safe I will not be using my sisters platelets, if I do need a platelet transfusion.
Counts still dropping, waiting for those baby stem cells to setup shop and start being productive.
WBC - .13
Hemoglobin - 9.8
Platelets - 61
Interesting story about platelets. There are two types of stem cell transplants:
- Auto - Where one's own stem cells are used
- Allo - Where a donors stem cells are used.
My transplant is an Auto, but if for some reason Auto transplant does not work then next step would be to do an Allo transplant. With Allo transplants, the best chance of getting a donor is from a sibling. Here is were the possible issue comes in with platelets. Both of my sisters donated platelets and had them directed to me. I was talking to a nurse one evening and she stated if I received platelets from my sister, there would be a good chance if I ever needed an Allo transplant they could no longer be donors for that. I brought this up to the doctor and she had several discussions with other people and I guess there are two schools of thought. So to be safe I will not be using my sisters platelets, if I do need a platelet transfusion.
Wednesday, July 27, 2011
July 2011 - Day +6
Nothing new to report today, which is good. Just waiting for the stem cells to find their way to the bone marrow.
WBC - .32
Hemoglobin - 9.9
Platelets - 85
WBC - .32
Hemoglobin - 9.9
Platelets - 85
Tuesday, July 26, 2011
July 2011 - Day +5
Status quo, not much new today. Still fight a little nauseous everyday. Blood pressure was low, so I have been put on IV fluids. Slept good last night, feeling general tired / laziness.
What is my day like?
1:30 am - Nurse draws blood and takes vitals
6:00 am - Nurse reports blood counts
7:00 am - Walk the halls for my exercise
7:30 am - Vitals - Blood pressure, temperature and oxygen levels are taken. I am also weighed.
7:30 am - Breakfast arrives
8:45 am - Pills, Pills, Pills
9:00 am - Doctor stops in
10:00 am - Walk the halls
10:30 am - Jane arrives for the day
11:00 am - Vitals
11:30 am - Walk the halls
12:30 pm - Lunch arrives
3:00 pm - Vitals along with weight again
5:00 pm - Walk the halls
5:30 pm - Dinner Arrives
7:00 pm - Vitals
10:00 pm - Bedtime
11:00 pm - Vitals
Blood counts continue to drop.
WBC - 1.26
Hemoglobin - 10.5
Platelets - 106
What is my day like?
1:30 am - Nurse draws blood and takes vitals
6:00 am - Nurse reports blood counts
7:00 am - Walk the halls for my exercise
7:30 am - Vitals - Blood pressure, temperature and oxygen levels are taken. I am also weighed.
7:30 am - Breakfast arrives
8:45 am - Pills, Pills, Pills
9:00 am - Doctor stops in
10:00 am - Walk the halls
10:30 am - Jane arrives for the day
11:00 am - Vitals
11:30 am - Walk the halls
12:30 pm - Lunch arrives
3:00 pm - Vitals along with weight again
5:00 pm - Walk the halls
5:30 pm - Dinner Arrives
7:00 pm - Vitals
10:00 pm - Bedtime
11:00 pm - Vitals
Blood counts continue to drop.
WBC - 1.26
Hemoglobin - 10.5
Platelets - 106
Monday, July 25, 2011
July 2011 - Day +4
So far so good, I am waiting for the floor to fall out, but so far I have been holding strong. I woke up this morning starving and have already eaten a bowl of frosted flakes and fruit, still waiting for the breakfast tray.
I continue to walk a mile plus everyday, I am told exercise, eating and mouth care are the most important things. Yesterday the thought of lunch or dinner just made me nauseous, so the nurse started giving me Ativan which made eating tolerable, though not enjoyable.
I am beginning to hate the smell of alcohol, whether a swap/wipe or hand sanitizer.
Counts continue to drop, though I am not neutropenic yet, that will probably occur in the next day or two. Neutropenic will mean that I will be highly susceptible to any type of infection or virus. When I become neutropenic I will need to wear a mask and gloves when I leave my room and likewise visitors to to my room will need to do the same.
WBC - 2.14
Hemoglobin - 11.9
Platelets - 150
Neutrophil - 2.0
I continue to walk a mile plus everyday, I am told exercise, eating and mouth care are the most important things. Yesterday the thought of lunch or dinner just made me nauseous, so the nurse started giving me Ativan which made eating tolerable, though not enjoyable.
I am beginning to hate the smell of alcohol, whether a swap/wipe or hand sanitizer.
Counts continue to drop, though I am not neutropenic yet, that will probably occur in the next day or two. Neutropenic will mean that I will be highly susceptible to any type of infection or virus. When I become neutropenic I will need to wear a mask and gloves when I leave my room and likewise visitors to to my room will need to do the same.
WBC - 2.14
Hemoglobin - 11.9
Platelets - 150
Neutrophil - 2.0
Sunday, July 24, 2011
July 2011 - Day +3
Today is Sunday and starting my 4th day in the hospital. I do have to say the nurses and patient techs have been outstanding, very caring and helpful. I actually slept pretty good last night, no storms in the middle of the night to wake me.
Blood counts this morning are showing drops on the white blood cells, which is expected since my bone marrow is not making any white blood cells yet and the current cells are dying off. Somewhere around day 10-14 my stem cells should make their way to the bone marrow and start producing white blood cells again.
Today's counts are:
- WBC - 3.5
- Hemoglobin - 11.8
- Platelets - 189
Blood counts this morning are showing drops on the white blood cells, which is expected since my bone marrow is not making any white blood cells yet and the current cells are dying off. Somewhere around day 10-14 my stem cells should make their way to the bone marrow and start producing white blood cells again.
Today's counts are:
- WBC - 3.5
- Hemoglobin - 11.8
- Platelets - 189
Saturday, July 23, 2011
July 2011 - Day +2
Not much new to report today. I had a little nausea yesterday, but nothing too bad, I was still able to eat all my meals. I am getting anti-nausea medicine to help.
Blood counts are still normal, but are expected to drop and probably bottom out at about day +7.
Blood counts are still normal, but are expected to drop and probably bottom out at about day +7.
Friday, July 22, 2011
July 2011 - Day +1
Starting my second day as an inpatient. Slept okay last night, besides being awoken for vitals every 4 hours and the blood draw at 2:00 am, at least I am detached from the IV pole for now.
Jane says the room has a smell of cream corn, though I don't smell it. The smell is excreted from my body do to the preservatives used to preserve the stem cells.
I woke up feeling pretty good this morning, actually starving at 5:30. I ate a bag of pretzels and waited for my breakfast. Breakfast came about 8:00 and it tasted pretty good, bacon and eggs two days in a row.
Blood counts are are their way down, but still within the normal ranges at this time.
Jane says the room has a smell of cream corn, though I don't smell it. The smell is excreted from my body do to the preservatives used to preserve the stem cells.
I woke up feeling pretty good this morning, actually starving at 5:30. I ate a bag of pretzels and waited for my breakfast. Breakfast came about 8:00 and it tasted pretty good, bacon and eggs two days in a row.
Blood counts are are their way down, but still within the normal ranges at this time.
Thursday, July 21, 2011
July 2011 - Day 0
I have officially become an inpatient, checked in at 6:00 am this morning. My room is on the 10th floor in the Kellog building. I even have view of the the United Center and the city sky line out my window.
My transplant occurred at 1:00 pm today. It took place right in my hospital room. The transplant was similar to a blood transfusion. Below are some pictures of the transplant.
The stem cells come out of the keg on the left and then warmed in a water bath on the right.
This is a picture if the stem cells being infused into my body. Fairly simply and painless process.
My birthday cake for my new birthday.
All in all things have been going good, we had people come into the room asking if the patient was in the room, I must be looking pretty good. I am told I will probably crash around days 4 - 7.
I will be hooked up to an iv until 2:00am, and then I will be iv free for a few days.
My transplant occurred at 1:00 pm today. It took place right in my hospital room. The transplant was similar to a blood transfusion. Below are some pictures of the transplant.
The stem cells come out of the keg on the left and then warmed in a water bath on the right.
This is a picture if the stem cells being infused into my body. Fairly simply and painless process.
All in all things have been going good, we had people come into the room asking if the patient was in the room, I must be looking pretty good. I am told I will probably crash around days 4 - 7.
I will be hooked up to an iv until 2:00am, and then I will be iv free for a few days.
Wednesday, July 20, 2011
July 2011 - Day -1
Back at the hospital today, my last day as an outpatient, tomorrow starts my inpatient stay. We will arrive at the hospital at 6:00 am on Thursday to get checked in and settled to let the fun begin.
Today is considered day -1, and tomorrow will be day 0, then we start counting up from there. That is officially how the transplant is tracked. My blood counts will be tracked daily and my white blood cells will eventually drop to 0, no immune system.
Today I am receiving my high dose Chemo (Melphalan), the day starts with an iv push of salene solution for 2 hours, then one bag of Chemo for an hour then another bag of Chemo for another hour, then another iv push of salene solution for 2 hours. Along with the Melphalan, I will be taking 5 other drugs mainly anti-nausea drugs and one drug to help the kidneys, since all dead cells pass through the kidneys.
During the infusion of the Chemo I will also be sucking on ice. One bad side affect of the Chemo is mouth sores and sores in the GI tract. The ice shrinks the blood vessels in the mouth so they get less of the Chemo drug, hopefully minimizing any mouth sores. If mouth sores occur it can make it difficult to eat and getting good nutrition during this time will be important.
Another side affect of the Chemo will be hair loss, I will loose all my hair, but it will grow back within a few months.
Tomorrow when I receive my stem cells, it will be considered my "new" birthday. I am told I will even get a birthday cake.
I am going to try and post everyday to keep everyone up to date.
Today is considered day -1, and tomorrow will be day 0, then we start counting up from there. That is officially how the transplant is tracked. My blood counts will be tracked daily and my white blood cells will eventually drop to 0, no immune system.
Today I am receiving my high dose Chemo (Melphalan), the day starts with an iv push of salene solution for 2 hours, then one bag of Chemo for an hour then another bag of Chemo for another hour, then another iv push of salene solution for 2 hours. Along with the Melphalan, I will be taking 5 other drugs mainly anti-nausea drugs and one drug to help the kidneys, since all dead cells pass through the kidneys.
During the infusion of the Chemo I will also be sucking on ice. One bad side affect of the Chemo is mouth sores and sores in the GI tract. The ice shrinks the blood vessels in the mouth so they get less of the Chemo drug, hopefully minimizing any mouth sores. If mouth sores occur it can make it difficult to eat and getting good nutrition during this time will be important.
Another side affect of the Chemo will be hair loss, I will loose all my hair, but it will grow back within a few months.
Tomorrow when I receive my stem cells, it will be considered my "new" birthday. I am told I will even get a birthday cake.
I am going to try and post everyday to keep everyone up to date.
Thursday, July 14, 2011
July 2011 - Stem Cell Collection - Complete!
Get to stay home today and tomorrow collected 2.54 million stem cells yesterday. So for the two days I collected just about exactly the maximum amount of 6 million. My baby stem cells are now in the hospital freezer waiting for next week. The other 3 million stem cells that are not used will be saved for 8 years.
Back to the hospital on Monday for final blood work and a visit with the doctor before the transplant takes place. The transplant process is as easy as a blood transfusion. They will take half of the stem cells collected and put them back into my body using the central line, it is a simple as that. Though the rough part is the high does Chemo that will wipe out my bone marrow to make room for the new baby stem cells collected. This will drop all my blood counts really low for about a week or a little more making me tired along with other side effects of the Chemo. Red blood cells and platelets will be transfused as needed. White blood cells, we have to wait for the new stem cells to make.
Back to the hospital on Monday for final blood work and a visit with the doctor before the transplant takes place. The transplant process is as easy as a blood transfusion. They will take half of the stem cells collected and put them back into my body using the central line, it is a simple as that. Though the rough part is the high does Chemo that will wipe out my bone marrow to make room for the new baby stem cells collected. This will drop all my blood counts really low for about a week or a little more making me tired along with other side effects of the Chemo. Red blood cells and platelets will be transfused as needed. White blood cells, we have to wait for the new stem cells to make.
Wednesday, July 13, 2011
July 2011 - Stem Cell Collection - Day 2
Back at the hospital today for a second round of stem cell collection. Correction from yesterday - goal is to collect 4 - 6 million stem cells. Yesterday I collected 3.59 million, so we were summonsed to return today. It is better to be close to the 6 million, so we are hoping for another 3 million today.
Concerned about platelets since this process also reduces the platelet count. According to this mornings CBC, platelets were down to 50; anything below 25 will require a platelet transfusion. Though it is a concern it is not unexpected, we will find out more this afternoon.
Found out more today about platelet donations, according to the blood bank platelets donated by a relative respond better in my body, but I can use any platelets regardless of blood type. Besides today, I know I will need platelets while in the hospital and platelets only last 5 days once donated. Platelets have to donated at Rush, anyone interested in donating e-mail me and I can provide more information. Platelet donations do take a while to extract, up to three hours.
Concerned about platelets since this process also reduces the platelet count. According to this mornings CBC, platelets were down to 50; anything below 25 will require a platelet transfusion. Though it is a concern it is not unexpected, we will find out more this afternoon.
Found out more today about platelet donations, according to the blood bank platelets donated by a relative respond better in my body, but I can use any platelets regardless of blood type. Besides today, I know I will need platelets while in the hospital and platelets only last 5 days once donated. Platelets have to donated at Rush, anyone interested in donating e-mail me and I can provide more information. Platelet donations do take a while to extract, up to three hours.
Tuesday, July 12, 2011
July 2011 - Stem Cell Collection - Day 1
I am currently sitting in a bed at the hospital today having my stem cells collected. The process is painless and uses my new central line that was placed last Thursday. The collection process collects the stem cells and also depletes the body of calcium, so I have been taking a full dose of Tums since Sunday. The technicians also suggested a shake with lunch, which I think I will have to try.
We arrived at the hospital at 8:00 am this morning amongst the rush hour traffic and the actual collection process started about 8:45 am. The collection process will continue for six hours. Once the collection is done we head the the infusion department to see how many stem cells were collected, the goal is to have 6-8 million. Stem cells are CD34 cells, who knew ones body had so many cells, and each cell had an identification. We will come back to the hospital everyday this week until the goal is met. If the goal is not met today, then it will be another mobilization shot tonight and another Neupogen shot in the morning.
Today will be a long day we left at 6:30 and probably won't return until 7:30 tonight. Bless Mom and Dad for helping get the girls to their practices and for dinner last night and tonight, this is a huge help. Just knowing the girls aren't sitting home alone gives us peace during the day. Thank you for everyone else who has offered to help, don't worry we will be using your resources soon.
Below is a picture of me and the machine that collects the stem cells.
We arrived at the hospital at 8:00 am this morning amongst the rush hour traffic and the actual collection process started about 8:45 am. The collection process will continue for six hours. Once the collection is done we head the the infusion department to see how many stem cells were collected, the goal is to have 6-8 million. Stem cells are CD34 cells, who knew ones body had so many cells, and each cell had an identification. We will come back to the hospital everyday this week until the goal is met. If the goal is not met today, then it will be another mobilization shot tonight and another Neupogen shot in the morning.
Today will be a long day we left at 6:30 and probably won't return until 7:30 tonight. Bless Mom and Dad for helping get the girls to their practices and for dinner last night and tonight, this is a huge help. Just knowing the girls aren't sitting home alone gives us peace during the day. Thank you for everyone else who has offered to help, don't worry we will be using your resources soon.
Below is a picture of me and the machine that collects the stem cells.
Saturday, July 9, 2011
July 2011 - Neupogen Shots
Started the Neupogen shots on Thursday, Jane has been giving me the shots every morning precisely at 7:00 am. Jane is making a good nurse, hardly feel the shots at all.
I believe the shots are doing their thing, I have started feeling some aches in my hips and back. This means the bone marrow is filling up with stem cells / white blood cells.
I believe the shots are doing their thing, I have started feeling some aches in my hips and back. This means the bone marrow is filling up with stem cells / white blood cells.
Thursday, July 7, 2011
July 2011 - Central Line
Phase one of the stem cell transplant is complete. Surgery for the central line went well. The hospital worked like clock work, surgery started when it was supposed and all went well. I am back home resting comfortably.
Phase two the Neupogen shots have been started. I received my first Neupogen shot today, which is really two shots. These shots are used to tell the body to produce more stem cells. Jane was trained to give these shots and actually gave me one today, she did good. Jane will be giving me these shots for the next 5 days, at which point the stem cell collection process will start.
Thanks you everyone for the well wishes!
Phase two the Neupogen shots have been started. I received my first Neupogen shot today, which is really two shots. These shots are used to tell the body to produce more stem cells. Jane was trained to give these shots and actually gave me one today, she did good. Jane will be giving me these shots for the next 5 days, at which point the stem cell collection process will start.
Thanks you everyone for the well wishes!
Friday, July 1, 2011
July 2011 - Final Preperation for SCT
Back at the hospital yesterday, final preparations for the stem cell transplant. Received a tour of the blood donation center where my stem cells will be extracted. Saw the unit where I will be staying and met the Physician Assistants and Nurse Practitioners. The rooms are very small. Seeing the hospital ward made everything feel so real.
It is hard to accept all of this when I really don't feel bad and actually being off the steroid for a week and 5 days I feel much more awake and less moody/cranky. Today I have to say I actually felt great.
Also met with the transplant doctor, I have to say he is so positive. He confirmed I am in complete remission and stated only about 25% of people get to complete remission before the Stem Cell Transplant. I asked if I was in complete remission why is a SCT needed. His response was two fold: 1. If I continue on the drugs I am on eventually I would incur nerve damage and my quality of life would suffer. 2. He stated we have to use all the weapons available just like the military, the induction therapy was like the air force and the SCT will be like sending in the ground troops. He stated to win the war we have to use all available divisions of the military.
I passed all the tests done 2 weeks ago, and insurance has given verbal approval, so it is all systems GO.
Things start rolling next week, with surgery for the central line on Thursday July 7th. Wednesday July 6th will be my last day of work for a while, they keep telling me I will be off for 3 months. Thursday will also mark the start of my Neupogen shots, Jane will receive her honoree Nursing certificate, since she will be giving me the shots every morning at 7:00 am for at least 4 days. The shots are given in the stomach. More details on the stem cell collection process next week, maybe even some pictures.
Just gave Jane a crash course on how to create a blog entry, so she can keep everyone up to date if my energy is zapped at anytime during this process.
It is hard to accept all of this when I really don't feel bad and actually being off the steroid for a week and 5 days I feel much more awake and less moody/cranky. Today I have to say I actually felt great.
Also met with the transplant doctor, I have to say he is so positive. He confirmed I am in complete remission and stated only about 25% of people get to complete remission before the Stem Cell Transplant. I asked if I was in complete remission why is a SCT needed. His response was two fold: 1. If I continue on the drugs I am on eventually I would incur nerve damage and my quality of life would suffer. 2. He stated we have to use all the weapons available just like the military, the induction therapy was like the air force and the SCT will be like sending in the ground troops. He stated to win the war we have to use all available divisions of the military.
I passed all the tests done 2 weeks ago, and insurance has given verbal approval, so it is all systems GO.
Things start rolling next week, with surgery for the central line on Thursday July 7th. Wednesday July 6th will be my last day of work for a while, they keep telling me I will be off for 3 months. Thursday will also mark the start of my Neupogen shots, Jane will receive her honoree Nursing certificate, since she will be giving me the shots every morning at 7:00 am for at least 4 days. The shots are given in the stomach. More details on the stem cell collection process next week, maybe even some pictures.
Just gave Jane a crash course on how to create a blog entry, so she can keep everyone up to date if my energy is zapped at anytime during this process.
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