Today was an easier day than yesterday. I received the chemotherapy exactly like yesterday, but there was a lot less going on without having a transfusion or extra magnesium and potasium put into my system. I was able to move around a bit and felt pretty good.
The doctors said my white blood cells actually went up a bit overnight, which I attribute to the blood transfusion. Decreasing the white blood cells is one of the main points of this pre-transplant chemo regimen. However, it takes a little more time for those to drop, so the doctors weren't worried. Everything seems to be going ok with the process for now.
However, there was one little accident today. As I was heading into the bathroom, I hear something hit the floor. I looked down and saw my IV was on the ground, and there was blood dripping on the ground. I had a quick "What the hell?" type of thought, before realizing that the blood was coming out of one of the three exterior tubes from my Hickman line.
My mother was in the room at the time, and I asked her to get the nurse. She came quickly towards the bathroom, and I had to tell my mom not to come near me but get the nurse. Luckily there was a nurse right outside of the room who was able to help me stop the blood from dripping and get everything back to normal. It wasn't that big of a deal overall, but it was kind of crazy for a moment to see blood quickly gathering on the floor and not knowing what was going on. That little ordeal helped to break the monotony of the day up. Nothing else new to report...still on track and staying focused on what lies ahead.
Friday, December 12, 2008
Thursday, December 11, 2008
Day -6
Today was my first day of pre-transplant chemo, and it truly was a busy day. I've had no less than two IVs running into my sytem since this morning, and as many as 5 different drugs or supplements pumping into me at one time. The pole they use to hang the IVs from is full and the tubes running from the pumps to my body are pretty confusing. However, the nurses have been through this before and everything has been pretty smooth in my opinion.
I received the Fludarabine and Cytoxin in the late morning. No problems there. I've gotten a little bit of nausea recently, but its not to the point where I think I'm going to throw up. Just a little uncomfortable. I'm also get my anti-nausea medication through an IV, and that is running most of the time. My hemoglobin was also down to 7.7 this afternoon, so I got a two unit transfusion of blood in order to bring that up. I didn't really notice the signs of having really low blood oxygen, but then again I'm not really exerting myself here in the hospital.
Today was also Isaiah's first visit to NIH. He appeared a little apprehensive about a new place when he first walked in, but he quickly made himself at home. He had a few questions about what was going on, but he has already seen Daddy go through enough chemo to understand what all the IVs are for. I had enough energy to spend time with him and fit in two games of Candyland. Probably haven't played that game since Elementary School.
Right now I am tired and about ready to fall asleep. So hopefully I have the same boring news to report tommorow! Thanks to everybody who has offered their prayers and support. It is definitely helping!
I received the Fludarabine and Cytoxin in the late morning. No problems there. I've gotten a little bit of nausea recently, but its not to the point where I think I'm going to throw up. Just a little uncomfortable. I'm also get my anti-nausea medication through an IV, and that is running most of the time. My hemoglobin was also down to 7.7 this afternoon, so I got a two unit transfusion of blood in order to bring that up. I didn't really notice the signs of having really low blood oxygen, but then again I'm not really exerting myself here in the hospital.
Today was also Isaiah's first visit to NIH. He appeared a little apprehensive about a new place when he first walked in, but he quickly made himself at home. He had a few questions about what was going on, but he has already seen Daddy go through enough chemo to understand what all the IVs are for. I had enough energy to spend time with him and fit in two games of Candyland. Probably haven't played that game since Elementary School.
Right now I am tired and about ready to fall asleep. So hopefully I have the same boring news to report tommorow! Thanks to everybody who has offered their prayers and support. It is definitely helping!
Wednesday, December 10, 2008
Day -7
I'm wearing a gown right now which makes me feel a bit more like a patient than yesterday. I got the Hickman line placed this morning, and my neck is incredibly sore. That line goes into the jugular vein right above the collarbone. The procedure was pretty simple, but there is pain when I try to move my neck or swallow. Its not too awful, but it is a nuisance. After coming out of my vein though, it is tunnelled under the skin and comes out of my body in the chest under the collar line. The lumens that hang down where I get hooked up for IVs are pretty obscure at that position, so it might actually be more comfortable than the PICC line. One of the nurses around here said that the pain will be worse tommorow before getting better, so thats something to look forward to.
I haven't started hydrating yet, but that should come along shortly. After doing that tonight, I'll be ready for the conditioning regimen of chemotherapy tommorow morning. I've just started noticing some of my hair coming back in, and this will probably delay any hair growth for a few more weeks. Oh well...I've gotten used to being bald and hairless.
So most of today has been waiting around. Kate was my only visitor today, and I expect more people to come in tommorow. I'm not experiencing any loneliness, home sickness, cabin fever, or depression over the hospital food yet. Things are mostly boring so far, and I figure thats a good thing.
I haven't started hydrating yet, but that should come along shortly. After doing that tonight, I'll be ready for the conditioning regimen of chemotherapy tommorow morning. I've just started noticing some of my hair coming back in, and this will probably delay any hair growth for a few more weeks. Oh well...I've gotten used to being bald and hairless.
So most of today has been waiting around. Kate was my only visitor today, and I expect more people to come in tommorow. I'm not experiencing any loneliness, home sickness, cabin fever, or depression over the hospital food yet. Things are mostly boring so far, and I figure thats a good thing.
Tuesday, December 9, 2008
Day -8
Today was a good day despite traffic tripling or quadrupling the time it usually takes to get from home to NIH. I met with plenty of people today about the transplant, but the most important meeting was with the lead transplant doctor. The feedback from him was that, other than cancer obviously, I am in excellent health. Supposedly I have about the best kidneys he has ever seen, and my heart, lungs, and other organs are doing great also! This is great news because it decreases the odds of side effects and of having a positive outcome from the transplant.
I feel like I had a good understanding of the protocol before meeting with him, and the discussion we had was reassuring. He spoke for a good amount of time regarding Graft Versus Host Disease (GVHD). That is a disease that affects tranplant recipients as their new cells can become harmful to the existing cells. Apparently about 50% of transplant patients get acute GVHD. That is a GVHD occurence within the first 100 days after transplant. There is also chronic GVHD which occurs further down the road, which affects about 50% as well. The odds of having chronic GVHD are less for those who don't get acute GVHD. I'm hoping to avoid both conditions, because they don't necessarily sound comfortable from what I've read.
The parts of the body that GVHD affect most often are the skin, GI tract, and the liver. The risk of GVHD is that with a suppressed immune system, transplant patients with GVHD aren't prepared to deal with the potential infection that might come along with GVHD. It does have potential for serious problems, but most people with GVHD have their symptoms successfully treated with medication.
Right now I find myself in my hospital room at NIH on my first night away from home. Its kind of odd tonight because there isn't anything going on and nothing planned. I'm just hanging out waiting for tommorow. In the morning I'll have the Hickman line placed in my chest. I've gotten used to having PICC lines placed in my arms to receive chemotherapy, but I fell it will be weird to have a catheter in my chest.
After the line placement, I'll have time to relax for most of the day before beginning hydration in the evening. I'll get IV hydration because one of the two drugs I'll get this week can be especially hard on the bladder. The extra hydration will ensure I'm going to the bathroom often, and preventing bleeding on the walls of my bladder. Yeah...that sounds uncomfortable, so I have no problem peeing often to avoid that.
I found out today that the actual day of transplant will be the 17th of December. That means today is Day -8. With the transplants the negative days are counted down until your transplant day...Day 0, which I've heard others call their re-birthday or something like that. Now I am about ready to get some sleep and to move on to day -7. Its kind of nice to count the days with this process. Each one will just bring me one step closer to being done with this disease forever!
I feel like I had a good understanding of the protocol before meeting with him, and the discussion we had was reassuring. He spoke for a good amount of time regarding Graft Versus Host Disease (GVHD). That is a disease that affects tranplant recipients as their new cells can become harmful to the existing cells. Apparently about 50% of transplant patients get acute GVHD. That is a GVHD occurence within the first 100 days after transplant. There is also chronic GVHD which occurs further down the road, which affects about 50% as well. The odds of having chronic GVHD are less for those who don't get acute GVHD. I'm hoping to avoid both conditions, because they don't necessarily sound comfortable from what I've read.
The parts of the body that GVHD affect most often are the skin, GI tract, and the liver. The risk of GVHD is that with a suppressed immune system, transplant patients with GVHD aren't prepared to deal with the potential infection that might come along with GVHD. It does have potential for serious problems, but most people with GVHD have their symptoms successfully treated with medication.
Right now I find myself in my hospital room at NIH on my first night away from home. Its kind of odd tonight because there isn't anything going on and nothing planned. I'm just hanging out waiting for tommorow. In the morning I'll have the Hickman line placed in my chest. I've gotten used to having PICC lines placed in my arms to receive chemotherapy, but I fell it will be weird to have a catheter in my chest.
After the line placement, I'll have time to relax for most of the day before beginning hydration in the evening. I'll get IV hydration because one of the two drugs I'll get this week can be especially hard on the bladder. The extra hydration will ensure I'm going to the bathroom often, and preventing bleeding on the walls of my bladder. Yeah...that sounds uncomfortable, so I have no problem peeing often to avoid that.
I found out today that the actual day of transplant will be the 17th of December. That means today is Day -8. With the transplants the negative days are counted down until your transplant day...Day 0, which I've heard others call their re-birthday or something like that. Now I am about ready to get some sleep and to move on to day -7. Its kind of nice to count the days with this process. Each one will just bring me one step closer to being done with this disease forever!
Monday, December 8, 2008
Monday Ramblings
It hit me this morning that tonight will likely be my last night at home with Isaiah and Kate in quite a long time. Thats a little bit of a depressing thought, but its not like any of us have a choice in that.
The plan is for me to be admitted Tuesday night with my line placed Wednesday morning and the pre-transplant chemo starting later that day. The craziness really is about to start.
Right now I'm on the 13th floor of NIH's Clinical Center looking out the window at a view of the Montgomery County landscape. Lots of trees with no leaves and plenty of buildings underneath. Thats the image. I just had a bone marrow biopsy, which is a notoriously painful procedure, but it wasn't too bad. I got a comment from the doctor about my young bones. I figure thats a compliment, but it means he has to drill a bit harder to access the bone marrow in my hip. I've got some time to kill right now, and on the schedule for today is a meeting with the Pain and Palliative Care team and a nutritional consult. I'm hoping they reccomend a strict adherence to a red meat and beer diet, but I don't have my hopes up for that.
The plan is for me to be admitted Tuesday night with my line placed Wednesday morning and the pre-transplant chemo starting later that day. The craziness really is about to start.
Right now I'm on the 13th floor of NIH's Clinical Center looking out the window at a view of the Montgomery County landscape. Lots of trees with no leaves and plenty of buildings underneath. Thats the image. I just had a bone marrow biopsy, which is a notoriously painful procedure, but it wasn't too bad. I got a comment from the doctor about my young bones. I figure thats a compliment, but it means he has to drill a bit harder to access the bone marrow in my hip. I've got some time to kill right now, and on the schedule for today is a meeting with the Pain and Palliative Care team and a nutritional consult. I'm hoping they reccomend a strict adherence to a red meat and beer diet, but I don't have my hopes up for that.
Friday, December 5, 2008
Transplant Still On
I had a CT scan this morning and met with the transplant doctor afterwards. The results of the CT were fairly positive after hearing what we did yesterday. There are three lesions of residual cancer that the doctors are following. From the CT scan today they observed that two of the lesions have held steady in size since the last PET scan in October, and that the third has grown by about 10%. Its obviously not great news that one of them has decided to regrow, and that further shrinkage didn't occur with the others. However, the 10% growth will not keep me from proceeding with the bone marrow transplant. So I am still on schedule to be admitted next week and have the transplant mid December.
Its a bit frustrating to me, because the prognosis for success with the transplant decreases with these results. If I had been in remission, I would have been lableled as having excellent chemo-sensitivity. With the regrowth, my chemo-sensitivity is only borderline. While the impression I was given before this news was that the bone marrow transplant would help guarantee a cure, now its not looked at in that way. It will hopefully still be a positive to get the new immune system, but I'll probably need some other type of treatment in the future as well. Oh well.
At least the plans that were made for the transplant aren't taken away, and I know what I'll be facing in the near future. This is another reminder that no person is in control on this journey, and I just have to do my best to enjoy the ride.
Its a bit frustrating to me, because the prognosis for success with the transplant decreases with these results. If I had been in remission, I would have been lableled as having excellent chemo-sensitivity. With the regrowth, my chemo-sensitivity is only borderline. While the impression I was given before this news was that the bone marrow transplant would help guarantee a cure, now its not looked at in that way. It will hopefully still be a positive to get the new immune system, but I'll probably need some other type of treatment in the future as well. Oh well.
At least the plans that were made for the transplant aren't taken away, and I know what I'll be facing in the near future. This is another reminder that no person is in control on this journey, and I just have to do my best to enjoy the ride.
Thursday, December 4, 2008
In Limbo
It has felt like a long week, and it just got a bit longer. Thanksgiving last week was excellent, except for the puking, coughing, and nose blowing that my family and I had to live through. It wasn't just me...but everybody at my parent's house got sick. It was still a good time to be around family, but it could have been a lot better.
Moving on to this week, I finally had my last day at work on Wednesday. With my cold in full effect, I felt drained going to work. However, I was determined to work these last three days. Its not quite sad to be leaving work for an undetermined amount of time, but more frustrating. I won't mind the break from working all day while going through chemotherapy. That was tough. However, not knowing when I'll be back annoys me. I received a lot of love from my coworkers this week, which is always reassuring. I wouldn't mind being a fly on the wall to see the chaos that might go on in my class when I'm not there. Hopefully for everyone involved it will be minimal.
So today was a long day at NIH with a PET scan, several other tests, and my clinic appointment. Usually NIH has been very efficient in terms of appointments, but today we had to wait longer than we would have liked. Some excellent news surely would have cheered my parents, Kate, and I up, but thats not quite what we got. The doctors shared that their was some increased intensity where the lesions in my chest previously were. What this means is that its possible the tumor has changed or is just not responding to chemotherapy like it was before. The cancer may be growing again, which obviously would not be a good thing. If this is the case, I would not be eligible for the bone marrow study right now. However, the doctors will not be sure if the tumor cells are growing until they see the results of a CT scan. I have a CT scan tommorow, and will meet with the transplant doctor to discuss what he sees late in the morning.
So the bone marrow transplant is not officially off, but its in doubt. We should know for sure whether or not it will happen in the near future by tommorow afternoon.
If the transplant is out of the picture for now, one of the doctors did have an idea for an experimental treatment that is taking place outside of NIH. So its good to know that the docs are thinking about other options. My mood right now is frustrated. The most emotionally difficult thing about my cancer experience is that when we have thought everything was figured out, plans seem to often change. So Kate and I aren't feeling down right now. Its obviously tough that things aren't going as we thought they would, but we just have to do whatever is best for my long term health.
I'll probably update the blog tommorow with information about the CT scan. Right now it is just time for more prayers and positive thoughts before the rest of our path is unveiled to us.
Moving on to this week, I finally had my last day at work on Wednesday. With my cold in full effect, I felt drained going to work. However, I was determined to work these last three days. Its not quite sad to be leaving work for an undetermined amount of time, but more frustrating. I won't mind the break from working all day while going through chemotherapy. That was tough. However, not knowing when I'll be back annoys me. I received a lot of love from my coworkers this week, which is always reassuring. I wouldn't mind being a fly on the wall to see the chaos that might go on in my class when I'm not there. Hopefully for everyone involved it will be minimal.
So today was a long day at NIH with a PET scan, several other tests, and my clinic appointment. Usually NIH has been very efficient in terms of appointments, but today we had to wait longer than we would have liked. Some excellent news surely would have cheered my parents, Kate, and I up, but thats not quite what we got. The doctors shared that their was some increased intensity where the lesions in my chest previously were. What this means is that its possible the tumor has changed or is just not responding to chemotherapy like it was before. The cancer may be growing again, which obviously would not be a good thing. If this is the case, I would not be eligible for the bone marrow study right now. However, the doctors will not be sure if the tumor cells are growing until they see the results of a CT scan. I have a CT scan tommorow, and will meet with the transplant doctor to discuss what he sees late in the morning.
So the bone marrow transplant is not officially off, but its in doubt. We should know for sure whether or not it will happen in the near future by tommorow afternoon.
If the transplant is out of the picture for now, one of the doctors did have an idea for an experimental treatment that is taking place outside of NIH. So its good to know that the docs are thinking about other options. My mood right now is frustrated. The most emotionally difficult thing about my cancer experience is that when we have thought everything was figured out, plans seem to often change. So Kate and I aren't feeling down right now. Its obviously tough that things aren't going as we thought they would, but we just have to do whatever is best for my long term health.
I'll probably update the blog tommorow with information about the CT scan. Right now it is just time for more prayers and positive thoughts before the rest of our path is unveiled to us.
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