As you all know I came home Wednesday late afternoon and then didn't have anything going on all day on Thursday. Friday came and I had to go in for labs to see if the effects of the Cytoxan were starting, not sure what the lab results said, but I didn't have to get any transfusions, so for now that's a good thing.
Saturday came and the boys came up to see us Josh and Matt are staying until Tuesday morning I think and I'm going to make sure Patty gets out with them to have some fun so my bubble boy status doesn't hinder their ability to have a pretty good time. They beat the storm coming up as they stayed in Parowan Friday night and got up early to make it up here. As far as my bubble boy status, I have to mask up when I go outside and am around groups of people that I don't know their health status. In the Car I usually take the mask off and once I get to the BMT clinic I can also take it off.
So, Sunday begins the twice a day shots, it's day 6 since getting the Cytoxan and in order to take advantage of the spring board effect that the doctors want, they are giving me Neupogen twice a day and another growth drug every night with the second dose of Neupogen each day. I also get to start a pretty heavy dose of anti-biotics to know down anything that might sneak past the mask and Patty to threaten me. Everyone is taking great care of me and I hope that my nausea can stay down so I don't waste any medicine that needs to help me.
They tell me that eventually I will need transfusions because my blood numbers will be so low, don't know when that will come, but will deal with when the time comes. I believe the care I'm receiving at LDS hospital is as good as it would be anywhere and better than most places, I appreciate they do their best to treat me as a person and not just as a name and birthdate as some places might.
Sunday, February 27, 2011
Thursday, February 24, 2011
2/24/2011 Out of the Hospital - for now
Got out of LDS hospital yesterday late afternoon, I came home and rested. We checked in about 8:30 Tuesday morning and immediately they opened up the ports on my central line started hooking medicine to them, I have three outlets on my Central Line and for most of the day they had all three hooked up. They brought up the blood tests and confirmed that the numbers we had worked so hard to get down to appropriate levels, had started back up and the diagnosis that Dr. Peterson had made was validated.
First I got Saline with Lasex ? that helps the fluids flow where they are suppose to flow - about as fast as they can. Then they hooked me up with another one called Mesna, which is a medicine to counteract the side effects of the Cytoxan (Chemo) that was to come later, it helps the bladder to not bleed and other side effects. Then after they ran both of them for a while, they hooked up some anti nausea medicine to me on the third port to get me ready for the main event. After the anti nausea they hooked up the Cytoxan and it ran it's course, all this while I was feeling pretty good, just sitting back watching TV and talking with Patty who was great all the time. They gave me some Dex, but it was only half the dose 5 pills that I had been taking at home, this was during the afternoon and I wondered how it would effect my that night.
About 7:00 they do shift change which is pretty normal for most hospitals, the night shift we got we OK but not as personable as the day shift, about every three hours they would come and change my Saline and Lasex and every 2 - 4 hours they would do vital signs. For some reason my blood pressure was up during most of the time I was in there. I'm not a back sleeper and that along with the effects of the DEX, I didn't get much sleep Tuesday night. I finally got the night nurse to give me a little something and so I probably got about 3 hours of dozing off and on sleep, maybe a little more, but it felt like less. I ended up kicking Patty out about 8:45 so she could go back to the condo to get a little more rest than being in the chairs in the room.
Morning came and I was feeling pretty lousy, I woke up with a splitting headache that needed some help, they gave me some medicine and it seemed to help. They came into get vitals first thing and I ordered breakfast, LDS has a pretty cool thing, you order room service from a menu when you feel like it and get to pick pretty much what you want to eat, it was nice. Breakfast came and I ate it, the food was pretty good. Then an hour or so later they came back in to take vitals again and that's when the fun began.
As I sat up for the CNA to get my vitals I started feeling a little nausea, at first it wasn't too bad so I didn't think about it, then it got bad and I threw up a little in my throat, I tried to get Patty's attention but it was too late all I could do was cover my mouth and that succeeded in making it spew all over the place - not a pretty site for those in the room, I felt bad for every one there because I was shaking a no help and they all got to clean up after me. I took a quick shower while they cleaned up the room and the bed. I got back into bed and after that kept the bucket with me the rest of the day, gladly I only needed it one other time briefly. At this time the PA came in and it was doubtful that I would be coming home yesterday, but everything else stayed down for the rest of the day and they finally kicked me loose about 5:00 yesterday. I came home with more medicine, a lot of nausea medicine, some antibiotics and others that are designed to keep me OK until I get back under their care.
I don't have anything to do today, but beginning tomorrow I go to give some more labs to start monitoring my levels to make sure the Cytoxan is doing what they designed it to do. Then again a couple of days later Day 6 - (Day 1 was getting the Cytoxan) to start getting the Neupogen and other growth factors to catch the rebound of the stem cell production for the best collection. So now Patty is justified in treating me like a bubble boy, when I go out I need to wear my heppa mask and I need to wash my hands and stay more cleaned up than I normally had done in the past. I will now be a week or two of tracking blood levels, taking shots and staying pretty close to home until I'm ready to begin collection again.
Looking forward for the boys to come and visit this weekend, the unfortunate part is that we won't be able to be to outgoing with them, I'll have to kick them and Patty out of the house to go have some fun if the weather will permit.
Thanks for all your thoughts and prayers, they do help.
First I got Saline with Lasex ? that helps the fluids flow where they are suppose to flow - about as fast as they can. Then they hooked me up with another one called Mesna, which is a medicine to counteract the side effects of the Cytoxan (Chemo) that was to come later, it helps the bladder to not bleed and other side effects. Then after they ran both of them for a while, they hooked up some anti nausea medicine to me on the third port to get me ready for the main event. After the anti nausea they hooked up the Cytoxan and it ran it's course, all this while I was feeling pretty good, just sitting back watching TV and talking with Patty who was great all the time. They gave me some Dex, but it was only half the dose 5 pills that I had been taking at home, this was during the afternoon and I wondered how it would effect my that night.
About 7:00 they do shift change which is pretty normal for most hospitals, the night shift we got we OK but not as personable as the day shift, about every three hours they would come and change my Saline and Lasex and every 2 - 4 hours they would do vital signs. For some reason my blood pressure was up during most of the time I was in there. I'm not a back sleeper and that along with the effects of the DEX, I didn't get much sleep Tuesday night. I finally got the night nurse to give me a little something and so I probably got about 3 hours of dozing off and on sleep, maybe a little more, but it felt like less. I ended up kicking Patty out about 8:45 so she could go back to the condo to get a little more rest than being in the chairs in the room.
Morning came and I was feeling pretty lousy, I woke up with a splitting headache that needed some help, they gave me some medicine and it seemed to help. They came into get vitals first thing and I ordered breakfast, LDS has a pretty cool thing, you order room service from a menu when you feel like it and get to pick pretty much what you want to eat, it was nice. Breakfast came and I ate it, the food was pretty good. Then an hour or so later they came back in to take vitals again and that's when the fun began.
As I sat up for the CNA to get my vitals I started feeling a little nausea, at first it wasn't too bad so I didn't think about it, then it got bad and I threw up a little in my throat, I tried to get Patty's attention but it was too late all I could do was cover my mouth and that succeeded in making it spew all over the place - not a pretty site for those in the room, I felt bad for every one there because I was shaking a no help and they all got to clean up after me. I took a quick shower while they cleaned up the room and the bed. I got back into bed and after that kept the bucket with me the rest of the day, gladly I only needed it one other time briefly. At this time the PA came in and it was doubtful that I would be coming home yesterday, but everything else stayed down for the rest of the day and they finally kicked me loose about 5:00 yesterday. I came home with more medicine, a lot of nausea medicine, some antibiotics and others that are designed to keep me OK until I get back under their care.
I don't have anything to do today, but beginning tomorrow I go to give some more labs to start monitoring my levels to make sure the Cytoxan is doing what they designed it to do. Then again a couple of days later Day 6 - (Day 1 was getting the Cytoxan) to start getting the Neupogen and other growth factors to catch the rebound of the stem cell production for the best collection. So now Patty is justified in treating me like a bubble boy, when I go out I need to wear my heppa mask and I need to wash my hands and stay more cleaned up than I normally had done in the past. I will now be a week or two of tracking blood levels, taking shots and staying pretty close to home until I'm ready to begin collection again.
Looking forward for the boys to come and visit this weekend, the unfortunate part is that we won't be able to be to outgoing with them, I'll have to kick them and Patty out of the house to go have some fun if the weather will permit.
Thanks for all your thoughts and prayers, they do help.
Sunday, February 20, 2011
2/20/2011 Slight change - On to Plan B
We met with Dr. Peterson on Friday, Patty had a strange feeling about why we were meeting with him instead of someone else since he is the head of the BMT unit and I guess she was kind of right.
Dr. Peterson said that because it was difficult for me to get high stem cell collection numbers and because some of my myeloma markers weren't as low as he was hoping and because it has now been 5-6 weeks since I was on Revlimid he talked to us about changing the protocol to interject some different procedures and medicines before I get back to the collection process, so here is the current plan.
On Tuesday I will be admitted to the hospital to be given Cytoxan (a chemotherapy) intravenously so they can monitor me and then after about 5-6 days they will start with the Neupogen and another growth agent to get the stem cells loosened up and ready for collection, then they will monitor me to see when the numbers are high enough to begin the collection and I'll be back to lying on my back for 4 hours every day until they get the rest of the stem cells we are looking for. The reason for the Cytoxan is because the way Dr. Peterson explained it, it creates a spring board effect for the stem cells, the body gets beat down but with the Neupogen and other growth factors it bounces back stronger and with higher numbers.
Dr. Peterson said that it has been his experience that changing to this protocol has shown in other patients to give us a better chance at a significantly longer period of remission, so it may take an extra week or two, but I'll trade that for more years of remission on the back end.
I'll have to enter the bubble boy period a little sooner with this protocol, but since I'm boring and don't go anywhere anyway it won't be too big of a pain for me, I'll have to learn to wear the heppa mask when we go out amongst the population.
We've really enjoyed having Amanda and Ryan up to visit us this weekend, we got to give Ryan his initiation to IKEA on Saturday and then they went out last night with one of his old Missionary Companions. They will be traveling back to Vegas tomorrow (Monday).
I'll write later this week and give a report on the status of my hair and anything else that comes to mind at the time.
Dr. Peterson said that because it was difficult for me to get high stem cell collection numbers and because some of my myeloma markers weren't as low as he was hoping and because it has now been 5-6 weeks since I was on Revlimid he talked to us about changing the protocol to interject some different procedures and medicines before I get back to the collection process, so here is the current plan.
On Tuesday I will be admitted to the hospital to be given Cytoxan (a chemotherapy) intravenously so they can monitor me and then after about 5-6 days they will start with the Neupogen and another growth agent to get the stem cells loosened up and ready for collection, then they will monitor me to see when the numbers are high enough to begin the collection and I'll be back to lying on my back for 4 hours every day until they get the rest of the stem cells we are looking for. The reason for the Cytoxan is because the way Dr. Peterson explained it, it creates a spring board effect for the stem cells, the body gets beat down but with the Neupogen and other growth factors it bounces back stronger and with higher numbers.
Dr. Peterson said that it has been his experience that changing to this protocol has shown in other patients to give us a better chance at a significantly longer period of remission, so it may take an extra week or two, but I'll trade that for more years of remission on the back end.
I'll have to enter the bubble boy period a little sooner with this protocol, but since I'm boring and don't go anywhere anyway it won't be too big of a pain for me, I'll have to learn to wear the heppa mask when we go out amongst the population.
We've really enjoyed having Amanda and Ryan up to visit us this weekend, we got to give Ryan his initiation to IKEA on Saturday and then they went out last night with one of his old Missionary Companions. They will be traveling back to Vegas tomorrow (Monday).
I'll write later this week and give a report on the status of my hair and anything else that comes to mind at the time.
Thursday, February 17, 2011
2/17/2011 Ready for more Collection
We had a good time back in Vegas but now it's time to come back to Salt Lake to get on with the treatment.
Who could have imagined how hard it would be to get my Central Line bandage changed. Everyone thought it would be no big deal to get a health care place to change the bandage and flush the lines. What they forgot or didn't know is that in order for someone to do this work, you must have a signed order by a Nevada licensed doctor and I don't have one. LDS Hospital tried faxing orders and called a lot of places and I even tried going to a Quick Care center to see if they would help me, but no one could or would.
So even though it was a couple of days longer than they wanted, they made an appointment for me with the Infusion Center at Dixie Hospital and we left Wednesday morning to make the appointment. They were very nice and when I told my story to the nurse, she told me that Utah has the same law as Nevada, that it would have to be a Utah doctor to give the orders to change the bandage at a Utah health facility.
We have an appointment tomorrow (Friday) and I will start my shots to be ready for the collection process to begin again, probably next Tuesday.
Amanda and Ryan are coming up to spend the weekend with us, we are looking forward to spending time with them, hope the weather doesn't lock us in the condo all weekend. I'll write more in a few days.
Who could have imagined how hard it would be to get my Central Line bandage changed. Everyone thought it would be no big deal to get a health care place to change the bandage and flush the lines. What they forgot or didn't know is that in order for someone to do this work, you must have a signed order by a Nevada licensed doctor and I don't have one. LDS Hospital tried faxing orders and called a lot of places and I even tried going to a Quick Care center to see if they would help me, but no one could or would.
So even though it was a couple of days longer than they wanted, they made an appointment for me with the Infusion Center at Dixie Hospital and we left Wednesday morning to make the appointment. They were very nice and when I told my story to the nurse, she told me that Utah has the same law as Nevada, that it would have to be a Utah doctor to give the orders to change the bandage at a Utah health facility.
We have an appointment tomorrow (Friday) and I will start my shots to be ready for the collection process to begin again, probably next Tuesday.
Amanda and Ryan are coming up to spend the weekend with us, we are looking forward to spending time with them, hope the weather doesn't lock us in the condo all weekend. I'll write more in a few days.
Thursday, February 10, 2011
2/10/2011 Back in Vegas for a few days
After a week of collection, my body didn't give up the numbers we were hoping for so they sent us home for a couple of weeks to let the body recuperate and get ready to finish the collection process. My collection total to date is approx. 5.7 million stem cells and they need about 5 million for each transplant (they always want a minimum amount for two transplants).
The last day of collection was last Saturday but we had to stay around in Salt Lake until Monday when I could get my central line bandage changed and get some instructions from the BMT staff and my patient coordinator. We left Salt Lake around noon on Monday and spent the night in Coral Canyon before coming onto Vegas Tuesday.
Patty and I are both back to work for a few days before I have to be back in Salt Lake on Friday Feb. 18th to begin the Neupogen and Mozobil shot routine so I can begin Apheresis on Tuesday Feb 22nd again. While not being in a bubble, we have to be a little careful to stay away from sick people because I have to be healthy to go forward with the procedures when we get back to Salt Lake and not have to stop the process for that type of problem.
It is kind of weird right now, since last April when I was diagnosed, I am on less drugs than I have been on for several years. And the only drug I'm on daily is a blood thinner to keep the blood from clotting around the central line that is installed, other than that I have my blood pressure and OTC vitamins I take. It's strange and I'm not sure that my body isn't having a small amount of withdrawals from everything.
The weather is suppose to be very nice this weekend, so we will try to enjoy it before we have to go back to the cold again.
The last day of collection was last Saturday but we had to stay around in Salt Lake until Monday when I could get my central line bandage changed and get some instructions from the BMT staff and my patient coordinator. We left Salt Lake around noon on Monday and spent the night in Coral Canyon before coming onto Vegas Tuesday.
Patty and I are both back to work for a few days before I have to be back in Salt Lake on Friday Feb. 18th to begin the Neupogen and Mozobil shot routine so I can begin Apheresis on Tuesday Feb 22nd again. While not being in a bubble, we have to be a little careful to stay away from sick people because I have to be healthy to go forward with the procedures when we get back to Salt Lake and not have to stop the process for that type of problem.
It is kind of weird right now, since last April when I was diagnosed, I am on less drugs than I have been on for several years. And the only drug I'm on daily is a blood thinner to keep the blood from clotting around the central line that is installed, other than that I have my blood pressure and OTC vitamins I take. It's strange and I'm not sure that my body isn't having a small amount of withdrawals from everything.
The weather is suppose to be very nice this weekend, so we will try to enjoy it before we have to go back to the cold again.
Friday, February 4, 2011
2/4/2011 Update on Cell Collection
Don't anyone fall off their chair, I know it's only been two days since the last blog but thought I'd share a little more about what has happened and what could happen the next few days.
I had my fourth collection of cells today, the numbers aren't coming in as high as the doctors were hoping, as I have mentioned before it takes about 5 million stem cells for one transplant and my total after today is about 4.3 million and the totals are dropping each day. I was called to go the the hospital to get another Mozobil shot tonight and will do the Apheresis collection tomorrow as planned, but after that there is a good chance that they will tell me to go away for some time period, could be 2 weeks to let the body regenerate and make more stem cells so that the next time around we can work to get the second 5 million stem cells. Don't know what this will do to the overall time period, but we are determined to go forward and they say it's not completely surprising as some people take even much longer.
This means we may be coming home for a week or two, but won't know until Monday or Tuesday of next week what our schedule will be.
Until later, hope everyone is well and happy.
I had my fourth collection of cells today, the numbers aren't coming in as high as the doctors were hoping, as I have mentioned before it takes about 5 million stem cells for one transplant and my total after today is about 4.3 million and the totals are dropping each day. I was called to go the the hospital to get another Mozobil shot tonight and will do the Apheresis collection tomorrow as planned, but after that there is a good chance that they will tell me to go away for some time period, could be 2 weeks to let the body regenerate and make more stem cells so that the next time around we can work to get the second 5 million stem cells. Don't know what this will do to the overall time period, but we are determined to go forward and they say it's not completely surprising as some people take even much longer.
This means we may be coming home for a week or two, but won't know until Monday or Tuesday of next week what our schedule will be.
Until later, hope everyone is well and happy.
Wednesday, February 2, 2011
2/2/2011 Did I mention that it's COLD!
Oh, did I say that it's cold up here, I know to you cold weather people you'll just think I'm being a baby, and maybe I am, but after most of my life in the desert of southwest Utah and Nevada, this is cold.
I had my second day of collection today, yesterday they collected about 1.3 million stem cells which sounds like a lot, but the number we are shooting for is at least 12 million and we were hoping for over 15 million that will provide some backup for me in the future, as we are told the typical transplant takes about 5 million cells. They like to take enough for two transplants, but we are hopefully going to get enough for 3.
Our day is pretty boring but it seems long, we have to be at the hospital about 8:00 am, they take labs, vitals and then I wait for the OK to get the Neupogen shots. After the Neupogen we talk to the Physician's Assistant about life and then head around the corner for the Apheresis room where I lay on a bed while they take my blood, circulate it through a machine and then give it back to me sans stem cells, this has been taking between 3-1/2 and 4 hours which gets us out of the hospital around 1:30 or 2:00, then after some lunch a small nap is in order then we watch a little TV and head back to the hospital at 6:00 pm for the Mozobil shot then usually by about 6:30 or 7:00 we're headed back to the condo for dinner. Then after a little TV or a Redbox Movie it's time for bed and we start all over again.
Oh, did I mention how cold it is up here. We'd like to break up the days with some walking around the Gateway or downtown, but it's been too cold and miserable for us desert dwellers to handle. We talked to Josh today and he said this cold goes clear down to Phoenix, that he didn't think it made it much past 40 down there today.
Until later, hope everyone is good and we are very appreciative of all the thoughts and prayers in our behalf.
I had my second day of collection today, yesterday they collected about 1.3 million stem cells which sounds like a lot, but the number we are shooting for is at least 12 million and we were hoping for over 15 million that will provide some backup for me in the future, as we are told the typical transplant takes about 5 million cells. They like to take enough for two transplants, but we are hopefully going to get enough for 3.
Our day is pretty boring but it seems long, we have to be at the hospital about 8:00 am, they take labs, vitals and then I wait for the OK to get the Neupogen shots. After the Neupogen we talk to the Physician's Assistant about life and then head around the corner for the Apheresis room where I lay on a bed while they take my blood, circulate it through a machine and then give it back to me sans stem cells, this has been taking between 3-1/2 and 4 hours which gets us out of the hospital around 1:30 or 2:00, then after some lunch a small nap is in order then we watch a little TV and head back to the hospital at 6:00 pm for the Mozobil shot then usually by about 6:30 or 7:00 we're headed back to the condo for dinner. Then after a little TV or a Redbox Movie it's time for bed and we start all over again.
Oh, did I mention how cold it is up here. We'd like to break up the days with some walking around the Gateway or downtown, but it's been too cold and miserable for us desert dwellers to handle. We talked to Josh today and he said this cold goes clear down to Phoenix, that he didn't think it made it much past 40 down there today.
Until later, hope everyone is good and we are very appreciative of all the thoughts and prayers in our behalf.
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